10.6092/issn.2038-3460/17408
This paper examines the scientific, social and digital processes that shape multiple forms of biovalue evident in the development, participation and use of the Simons Simplex Collection (SSC), the largest autism genetic databases in North America. Based on interviews with SSC study participants and investigators, as well as a content analysis of a range of SSC materials, this empirical study makes visible the various contours of biovalue that are entangled between scientists who use this data for autism research, families who donate their blood and medical information to gain access to needed resources, and digital networks of exchange that make hybrid connections between and among these emergent biosocial communities. By examining the production of and interactions between scientific, social and digital forms of biovalue this paper highlights the constraints embedded within this heterogeneous assemblage to offer a critical account of the limits of the SSC and subsequent knowledge production. I contend that while the multi-dimensionality of biovalue built into the fabric of the SSC structure creates various contours of biovalue, it structurally constrains the types of production and knowledge flows that are allowed to be conceived and generated.
application/pdf
2038-3460
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Jennifer S. Singh
https://creativecommons.org/licenses/by-nc-sa/2.5/
Tecnoscienza – Italian Journal of Science & Technology Studies
digital networks
Contours and Constraints of an Autism Genetic Database. Scientific, Social and Digital Species of Biovalue
Text.Serial.Journal
https://tecnoscienza.unibo.it/
9
Essays
2019-01-31
2023-06-25
2019-01-31
2023-08-31
61-88
TS
Jennifer S. Singh
2018
10.6092/issn.2038-3460/17408
61
Georgia Institute of Technology
2038-3460
2
digital networks
en
88
Contours and Constraints of an Autism Genetic Database. Scientific, Social and Digital Species of Biovalue
https://tecnoscienza.unibo.it/article/download/17408/16266
9
                                                                               Essay
                                                                                       61




Contours and Constraints of an Autism
Genetic Database
Scientific, Social and Digital Species of Biovalue
Jennifer S. Singh
Georgia Institute of Technology



    Abstract: This paper examines the scientific, social and digital processes that
    shape multiple forms of biovalue evident in the development, participation
    and use of the Simons Simplex Collection (SSC), the largest autism genetic
    databases in North America. Based on interviews with SSC study participants
    and investigators, as well as a content analysis of a range of SSC materials,
    this empirical study makes visible the various contours of biovalue that are
    entangled between scientists who use this data for autism research, families
    who donate their blood and medical information to gain access to needed
    resources, and digital networks of exchange that make hybrid connections
    between and among these emergent biosocial communities. By examining the
    production of and interactions between scientific, social and digital forms of
    biovalue this paper highlights the constraints embedded within this heteroge-
    neous assemblage to offer a critical account of the limits of the SSC and sub-
    sequent knowledge production. I contend that while the multi-dimensionality
    of biovalue built into the fabric of the SSC structure creates various contours
    of biovalue, it structurally constrains the types of production and knowledge
    flows that are allowed to be conceived and generated.

    Keywords: autism; genetic database; biovalue; biosociality; digital networks.

    Corresponding author: Jennifer S. Singh, School of History and Sociology,
    Georgia Institute of Technology, 221 Bobby Dodd Way, Atlanta, GA 30332-
    0225, USA. Email: jennifer.singh@hsoc.gatech.edu




     The power of the Simons Simplex Collection (SSC) to clarify the genetic basis
     of autism spectrum disorder has been made abundantly clear over the last two
     years…landmark findings are a testament to the creativity of the researchers,
     as well as to the inspiring commitment of the more than 2,600 families who
     took part in the SSC.
                  (Senior scientist at Simons Foundation Autism Research Institute)



TECNOSCIENZA
Italian Journal of Science and Technology Studies
9 (2) pp. 61–88 – ISSN 2038–3460
www.tecnoscienza.net                                2018                              61
62                                                              Tecnoscienza – 9 (2)

     My family entered the study and it felt like we were part of a community
     working towards healing. Then we were given the opportunity to join the In-
     teractive Autism Network. We thought it would be wonderful to join so that
     we could be part of a larger community dedicated to connecting parents as
     well.
                       (Parent who participated in the Simons Simplex Collection)


1. Introduction

    The development, participation and use of disease specific genetic da-
tabases in the 21st century is producing selective forms of value embed-
ded in collected samples and creating distinctive relationships and ex-
changes among and between scientists and research participants. As indi-
cated in the opening epigraphs, data collected for the Simons Simplex
Collection (SSC), an autism genetic database, holds exceptional value for
scientists of current and future research on autism genetics. At the same
time, on-going participation through digital networks creates a distinct
community among those who donate blood and medical information for
specific genetic research endeavours like the SSC. The emergence of these
processes and relationships is due in part to the changing dynamics of the
collection, participation and use of genetic information for scientific re-
search on complex human conditions. For scientists, we are seeing a shift
from individual investigators collecting data to conduct their own re-
search to collaborative research consortiums working together to develop
genetic databases and large multi-sited scientific research networks. For
research participants, the donation of blood and medical information may
not be a one-time affair, but rather consist of on-going participation and
an opportunity to be part of a larger community. Within this context, dis-
tinct configurations of participation and research are emerging in ge-
nomic science that are shaping various forms of biovalue. The purpose of
this paper is to empirically investigate the contours and constraints of
biovalue situated within these emergent scientific and biosocial processes.


2. Species of Biovalue and Emergent Biosocialities

    Science, Technology and Society (STS) scholars have engaged with
both the economic and biosocial exchanges and assemblages involved in
the development, participation and use of national biobanks (Tutton and
Corrigan 2004; Peterson 2005; Busby 2006; Tutton 2007; Hoeyer 2008)
and disease specific genetic databases (Novas 2006; Haddow et al. 2007;
Callon and Rabeharisoa 2008; Dixon-Woods, et al. 2008). Ideas about the
relationship between the life sciences and capitalization have been articu-
lated within STS through concepts such as “bioeconomics” (Rose 2001)
and “biocapital” (Sunder Rajan 2006), and “life as surplus” (Cooper
Singh                                                                      63

 2008). Catherine Waldby (2002) developed the concept of biovalue, or
 what she describes as in-vitro vitality produced by the biotechnical re-
 formulation of living processes. More specifically, tissue economies of
 blood, organs, and cell lines in neoliberal capitalism alongside emergent
 biotechnologies have enabled donated tissues to take on multiple uses
 and adopt multiple trajectories (Waldby and Mitchell 2006). In this pro-
 cess, tissue donations are transformed from an act of direct civic respon-
 sibility between fellow citizens (e.g., voluntary blood donation) into a
 complex network of donor-recipient relations heavily mediated by bio-
 technical processes and a range of institutional complexes. In such in-
 stances, we learn how tissues are open to the micro-technical manipula-
 tion of productivity and in genomics research, an opportunity for “new
 circuits of bioproductivity” that can be “mined” indefinitely to contribute
 simultaneously to public and private value in the present and in the future
 (Mitchell and Waldby, 2010, 340).
     To better understand STS contributions examining the relationship
 between the life sciences and capitalism Stefan Helmreich (2012) con-
 ducted a genealogical analysis of scholarship on biocapital. He identified
 two theoretical strands, including 1) Marxist feminist approaches, which
 occupy questions of the binary between productive labour (labour that
 has monetary value) and reproductive labour (labour that is not associat-
 ed with a wage) and 2) Marxist Weberian approaches that focus on ques-
 tions of meaning, information management, and speculation. In the latter,
 “value in the market sense and value in the ethical sense co-constitute one
 another in biocapital” (Helmreich 2012, 465). Both of these clusters en-
 gage with Marx’s political economy and Foucault’s biopolitics, since they
 both consider the integrative analysis of economy, society, and politics
 (e.g., Marx), as well as mechanisms through which life processes are con-
 trolled under systems of authority over knowledge, power, and the pro-
 cesses of subjectivism (e.g., Foucault). In the advent of emergent biotech-
 nological innovations, like genomic science, Helmreich identifies new
 kinds of financial speculation, academic-industrial biotech hybrids, and
 the new relations of commoditization embedded in notions of biocapital.
 Importantly, for the purposes of this paper, Helmreich’s genealogical rep-
 resentation of biocapital offers ‘different species’ of making biology into
 capital, which he describes as an unstable process consisting of exchanges
 that correspond to “economic, cultural, social, and symbolic species of
 capital” (Helmreich, 2012, 474). I interpret Helmreich’s genealogy to
 suggest that classifications of biocapital can take different formulations of
 (as well as move beyond) financial exchanges thereby opening up the
 multi-dimensionality of various forms of negotiated systems of value ex-
 change.
     More recently, concrete examples of the hybridity and multiplicity of
 biovalue has emerged based on research of data-intensive infrastructures,
 including biobanks (Hauskeller and Beltrame 2016; Tempini 2017; Tim-
 mons and Vezyridis 2017;) Christine Hauskeller and Lorenzo Beltrame
64                                                          Tecnoscienza – 9 (2)

investigated public and private umbilical cord blood (UCB) biobanking
practices and the circuits of UCB biovalue. They found that rather than a
dichotomous private-public distinction of economies (e.g., solidarity ver-
sus profit), there is an overlap and hybridization between distributive and
market economy of UCB. Through different scenarios of UCB donation,
they identified analytical distinctions between social, cultural, and biopo-
litical implications within different regimes of UCB banking−distinctions
ranging from life-saving tissue to promissory objects for future use. They
contend that these complex bioeconomies coexist and hybridize into ex-
change systems that do not operate within dichotomous distinctions be-
tween public and private (Hauskeller and Beltrame, 2016). Niccolò
Tempini (2017) also engages with the multi-dimensionality and hybridity
of value by investigating the creation of value in an online community and
data-intensive infrastructure called PatientsLikeMe (PLM), a social media
network for patients. In this example, Tempini identifies four dimensions
of value in PLM that depend on the situation of digital data use and cir-
culation, including business, scientific, community, and individual values.
For example, scientific value is generated when the data on PLM pro-
vides good evidence for conducting health research (e.g., peer review
publications). Community value, on the other hand, is generated when
the data on PLM can be used to foster social interaction and inclusive
communities (Tempini, 2017, 196). Like Hauskeller and Lorenzo,
Tempini also recognizes these different values as both multidimensional
and situated, where “different kinds of value creation require different
sets of engagements with data” (2017, 207). Collectively, these examples
offer insightful distinctions about the production, multi-dimensionality,
and hybrid contours of biovalue that are developing at the intersection of
large data collections involving a heterogeneous assemblage of many ac-
tors and materials.
     The ideas of ‘different species’, multi-dimensionality and situated
shaping of values in relation to and beyond the early notions of biocapital
and biovalue offer insight to the current analysis of actors and biomateri-
als circulating within the Simons Simplex Collection (SSC). This framing
opens the opportunity to investigate the heterogeneity and interconnect-
ed biovalues embedded in scientific, social and digital networks of ex-
change. It is through the development, production and use of these dif-
ferent species of value that we begin to see how biovalue, can be more
than the production of commodities that creates financial value; it also
entails “the embodiment of intellectual, relational, and emotional re-
sources and capacities” (Birch and Tyfield 2013, 314). As I make evident
in the pages that follow, not only do the social and ethical values enable
the production and exploitation of scientific and/or economic biovalue in
the SSC, these different situated values are also interconnected and co-
constitutive of each other. By unpacking the dynamics of these multi-
dimensional contours of biovalue, this study offers a nuanced empirical
example of the reciprocal and hybrid expressions of biovalue generated
Singh                                                                     65

 within a heterogeneous assemblage of people, data, and digital networks
 of exchange. This case study also makes visible the knowledge and bioso-
 cial constraints built into the SSC due to the strict criteria for inclusion
 and the preconceived genetic hypothesis driving the development of this
 autism genetic database.
     Alongside these new circuits of bioproductivity is the emergence of
 new social relations and collectivities; or what Paul Rabinow (1992) refers
 to as biosociality. These new forms of social relations are emerging based
 on people’s shared biological identities related to particular bodily condi-
 tions such as genetic diseases or illness identities (Rabinow 1992). Social
 connectedness through corporeal or genetic linkages is especially evident
 in groups that come together to share experiences or advocate for par-
 ticular diseases. Paul Rabinow and Nicolas Rose describe this phenome-
 non as “strategies for intervention upon collective existence in the name
 of life and health,” which are now being specified in terms of emergent
 biosocial collectivities based on specific genetic diseases (Rabinow and
 Rose 2006, 197). Chloe Silverman draws on the collectivizing elements of
 biosociality in autism genetics research based on parent activism in autism
 science. She argues that parent advocates who speak for people with au-
 tism are “legitimated by multiple affinities built on genetic associations
 and physiological parenthood” (Silverman 2008, 39-40). Silverman argues
 that genetics establishes a language of affinity and kinship, which serves
 as a basis for forming biosocial communities.
     In the context of donating biomaterials to disease specific biobanks or
 genetics research that collects large numbers of samples based on a par-
 ticular disease, there are various ways people come to participate and the
 types of social connectedness that prevails (Dixon-Woods, et al. 2008;
 Michie et al. 2011; Singh 2015). For example, families who donated to a
 cancer tissue bank viewed their participation as a way to become embed-
 ded within disease-specific communities; forming “cooperative hybrids”
 with scientists that rely on “trust, solidarity, shared values” (Dixon-
 Woods 2008, 76). I also investigate biosociality at the community level
 based on participation in an autism genetic database, where families of a
 child with autism felt obligated to participate to help their family and be-
 come more involved in the autism scientific community (Singh 2015). The
 families also conveyed a sense of altruism to participate in order to help
 the broader autism community. Both of these narratives of participation
 were tied to the shared emotional experiences of raising a child with au-
 tism. As these studies convey, biosociality takes on many different con-
 tours that can be shaped by genetics research itself through the language
 of affinity and kinship, the desire to be part of disease communities, and
 the shared corporeal vulnerability and somatic suffering.
     In the case of SSC, biosociality takes on new contours that manifest
 through the act of donating blood and medical information to an autism
 genetic database in combination with continued participation and virtual
 connectivity with other SSC families. These families are brought together
66                                                            Tecnoscienza – 9 (2)

based on their shared experiences of having only one child diagnosed
with autism and biosociality is sustained through digital networks that
keep SSC families engaged in a unique autism genetic community. How-
ever, I argue that these forms of biosociality are constituted based on the
assumptions built into the SSC, which was designed to bring specific
groups of people together in order to test a unique genomic hypothesis.
Even though virtual modes of interaction were developed to bring to-
gether SSC families, these collectives are strictly defined based on the
priorities deemed most useful for scientists who conduct genetics re-
search on autism. Thus, the ideas of autism genetic causation and the bi-
omedical classification of autism shape the kinds of biosocial configura-
tions that coalesce around the SSC. I contend that while these biosocial
communities are beneficial to the families who participate, they are lim-
ited to those families who meet the strict inclusion criteria for SSC, as
well as those who choose to remain in contact with the SSC through digi-
tal networks of exchange.
    Within the contours of biovalue and biosociality discussed above, the
aim of this paper is to empirically investigate the multi-dimensionality of
biovalue entangled within the production, participation and use of the
SSC and how these different forms of biovalue are interwoven and mutu-
ally constitutive of each other. As I make evident throughout the paper,
these different contours of biovalue and biosocial communities that take
shape within the SSC are based on a particular kind of family and specific
characteristics of autism, which I assert creates new forms of collective
identity and technoscientific exchanges and futures for scientists and re-
search participants alike. At the same time, I argue that these emergent
research assemblages build constraints on the kinds of knowledge gener-
ated and possibilities for further research on autism.
    This paper offers several distinctive contributions that set it apart
from other STS analyses of genetic databases in the context of biovalue
and biosociality. First, the SSC is a autism specific database, not a popula-
tion database. Compared to national gene banks that collect biomaterials
and clinical information from the general population, the kinds of
biovalue generated by families who participate in the SSC holds a differ-
ent set of meanings given their embodied experiences with autism. Se-
cond, the SSC is derived from a very selective group of families who have
one child diagnosed with autism (e.g., simplex families), which was spe-
cifically designed to identify spontaneously acquired genetic mutations
that scientists believe are the cause of some forms of autism. The clinical
characterization of the child with autism and their family also had to meet
certain criteria for inclusion; strict criteria that holds particular value for
scientists. Thus, the specific genetic mechanism, family structure and
strict inclusion criteria creates an opportunity to critically analyse the
kinds of knowledge production, biosociality, and data flows that are pro-
duced and constrained within these scientific boundaries. Third, this
study investigates multiple actors involved in the funding (Simons Foun-
Singh                                                                       67

 dation), development (study coordinators), participation (families) and
 use (scientists) of the SSC, as well as digital platforms that are uniquely
 designed to sustain the relationship among these hybrid collectives. This
 heterogeneous assemblage allows me to investigate the relationship be-
 tween the SSC and multiple actors, the controversial processes in the de-
 velopment and use of this collection (Canada et al. 2014) and the differ-
 ent forms of clinical labour (Mitchell and Waldby 2010) needed to main-
 tain persistent links between scientists, participants, biospecimans and
 data in all their multiple forms.


 3. Methodology

     To investigate the social, scientific, and digital forms of biovalue em-
 bedded in the development, participation, and on-going use of the SSC,
 this paper draws on various sources of primary data, including: in-depth
 interviews with parents who participated in the SSC (N=23 SSC families)
 and researchers who were involved in the SSC data collection (N=9). I
 conducted the interviews between 2008 – 2013, which were recorded,
 transcribed and coded for central themes using grounded theory meth-
 ods, including open and focused coding, theoretical memo writing, and
 generation of themes (Charmaz 2006). This study received IRB approval
 to conduct interviews from Georgia Institute of Technology, protocol
 H12077.
     A second set of data consists of a content analysis of 78 scientific arti-
 cles that have used the SSC database as a primary resource. These articles
 were analyzed to determine the type of scientific knowledge being pro-
 duced using the SSC. Scientific articles were identified by conducting a
 literature search in three databases in September 2017 using the search
 term “Simons Simplex,” including PubMed (all fields), Web of Science
 Core Collection (title/keyword/abstract), and PsycINFO (all text). I also
 added scientific articles featured on the Simons Simplex Communi-
 ty@IAN (Interactive Autism Network) and the Simons Foundation Au-
 tism Research Institute (SFARI) websites, to account for any articles not
 identified through the database searches. I collected the scientific articles
 in Endnote referencing software and coded for type of autism research
 conducted (e.g., genetic causation, environmental causation and/or,
 symptom measurement – phenotype).
     A third set of data is a selective content analysis of two websites. The
 first is the SSC Community@IAN website, which displays public infor-
 mation and serves as a digital network of 1,500 SSC families who want to
 remain in contact with SSC investigators and other SSC families. I deter-
 mined the type of SSC-based research reported to families through this
 digital exchange compared to the scientific literature identified above.
 The second is the Simons Foundation Autism Research Initiative (SFARI)
 website, which is the web portal of information about SSC that offers in-
68                                                           Tecnoscienza – 9 (2)

formation to researchers on how to order SSC samples and/or recruit
SSC families using the SSC Community@IAN. These two websites were
analyzed to establish the types of on-going transactions between and
among parents and scientists who are involved with the SSC.
    Collectively, this data makes visible the types of scientific, social, and
virtual relations, forms of knowledge exchanges, and biovalue that are
emerging in the flows of scientific development and use of the largest ge-
netic database designed to investigate specific genetic mechanisms associ-
ated with autism.


4. A “Cadillac Resource” for Autism Genetic Research

    The Simons Simplex Collection (SSC) was funded by the Simons
Foundation, a private non-profit philanthropy founded in 1994 by bil-
lionaire Jim Simons and his wife Marilyn. Jim Simons is a MIT trained
mathematician and founder of one of the world’s most successful Wall
Street Hedge funds. Marilyn Simons is an economist and currently presi-
dent of the Simons Foundation and board member at the Cold Spring
Harbor Laboratory, a research facility specializing in molecular biology
and genetics. Initially, the Simons Foundation focused their philanthropy
by donating tens of millions of dollars to math and science endeavors
worldwide. In 2003, the Simons Foundation formalized their investments
in autism research by starting the Simons Foundation Autism Research
Initiative (SFARI). SFARI’s goal was to increase the scientific under-
standing of autism spectrum disorders in order to benefit individuals and
families challenged by these disorders. The foundation would focus on
developing tools that scientists could use to enhance their understanding
of autism.
    One of the first major projects launched by SFARI was the Simons
Simplex Collection (SSC). In 2006, the goals of the SSC were set by
SFARI to recruit and carefully evaluate DNA and clinical information of
more than 2000 autism families from twelve university research clinics
throughout the United States and Canada (SFARI nd-a). At the request
and advisement of scientists working in the field of autism genetics, the
SSC would be different from other autism genetic collections1.
    First, the SSC was starting from the ground up, what Mitchell (2012)
refers to as a de novo approach, where the standardization of biospeci-
men and clinical information is collected and stored in one uniform man-
ner. As I will discuss in more detail below, the SSC was designed to iden-
tify certain types of genetic mutations, which required a certain kind of
family structure as well as detailed clinical measurements of autism. The
SSC was also designed to recruit and collect data in academic based clin-
ics already serving children with autism and their families. It was pre-
sumed that this would not only allow scientists to easily recruit families to
Singh                                                                               69

 participate in the SSC but also enable allow scientists to effortlessly re-
 contact families for follow-up studies. The design and scope of the pro-
 ject would not only make the SSC one of the largest autism genetic data-
 bases available to scientists and provide a unique genetic collection with
 associated data consisting of detailed and precise characterization of the
 individual with autism and their family. As they saw it, “rigorous pheno-
 typing maximizes the value of the resource for a wide variety of future re-
 search projects on the causes and mechanisms of autism” (SFARI nd-a).
 Consequently, scientists refer to the SSC as the “Cadillac resource” for
 conducting autism genetics research; a metaphor or scientific practice of
 branding (Tupasela 2016) that identifies how a large database of clinically
 and genetically precise data is superior to previous autism genetic collec-
 tions. This type of branding has significant symbolic and strategic value,
 since the scientific and potential financial gains through diagnostic and
 treatment developments will be accrued further downstream (Tupasela
 2016).
     From the beginning of the project, the SSC took a venture capitalist
 approach to establish a resource that would be of significant value to sci-
 ence. I characterize the SSC in this way because when data collection
 started in 2008, genetics research on autism had limited successes in find-
 ing major genes associated with autism. The SSC was developed based on
 scientific data that suggested rare spontaneous genetic mutations were in-
 volved in a small number of autism cases. The SSC was specifically de-
 signed to test this hypothesis with no guarantee that this genetic mecha-
 nism would reveal clues to the causes of autism. At the time, it was one of
 the only leads autism genetic scientists had after millions of dollars of pri-
 vate and public investments had been made in autism genetics research
 (Singh 2016). Strategically, the Simons Foundation made investments in
 scientists who were not necessarily studying autism, but who were leaders
 in a particular scientific field. As one autism genetic scientist involved in
 the collection stated:

        Some of the best researchers, not in autism, but some of the best neural
        scientists and functional biologists and geneticists and such…came to the
        table simply by virtue of money. (SSC scientist interview #1)

     Thus, in autism science, as with certain types of financial data, the Si-
 mons Foundation made calculated investments based on past perfor-
 mance, which according to Jim Simons is the “best predictor of success”
 (Regalado 2005). No private philanthropy has made the kinds of financial
 investments toward autism research as the Simons Foundation, which
 currently has a budget of $75 million dollars a year and since 2007 has
 “provided or committed $380 million in external research support to
 more than 400 investigators in the U.S. and abroad” (SFARI nd-b). A ma-
 jor part of this investments was the development of the SSC. The collec-
 tion of data for the SSC was completed in 2011 by twelve collection sites
70                                                           Tecnoscienza – 9 (2)

in the U.S. and Canada that acquired samples from 2,644 simplex fami-
lies, making it one of the largest autism specific databases in the world.


5. Contours and Constraints of Biovalue

    There are many species of biovalue shaped through the processes of
developing the SSC and the type of data available for subsequent use. I
identified three multi-dimensional contours of biovalue situated within
the interconnections between scientific, social and digital networks of ex-
change consisting of various forms of biomaterials, data, and knowledge
production. While these contours are not mutually exclusive, this frame-
work helps to highlight the various domains of biovalue embedded in the
development and use of the SSC for the scientists who use the data, the
families who participate in the database, and the hybrid collectives they
form through digital networks of exchange. Further, these different con-
tours help to distinguish the constraints and consequences of knowledge
production and flows that are bounded within the selective criteria used
to develop the database.

5.1 Scientific Biovalue: Family Structure, Clinical Precision and
   Biomaterials

    Scientific biovalue was structured into the SSC from the beginning in
order to test the hypothesis that rare de novo (spontaneous) copy number
variants (CNVs) are present at a higher rate in children with autism than
in unaffected children (CNVs are small genetic deletions or duplications
in the genome) (Singh, 2016). Given this genomic style of thought, the
SSC is comprised of DNA and clinical information from families with on-
ly one child diagnosed with an autism spectrum disorder (ASD), both bi-
ological parents, and one unaffected sibling (i.e., simplex families)2. Based
on this research design, scientists are working under the assumption that
rare de novo CNVs account for a significant fraction of autism with un-
known causes and in order to find these genetic mutations, thousands of
simplex families are needed. Thus, the simplex family structure holds par-
ticular value for autism genetic scientists who are in pursuit of identifying
and understanding the relationship between autism and CNVs. As I dis-
cuss elsewhere (Singh 2016), this emergent technoscientific approach of-
fered scientists a path forward in what was essentially a failed attempt by
the scientific community to find any major genes for autism despite large
investments of time, people, and money.
    The SSC also placed significant attention to collecting precise clinical
data of the families who participated. Before the SSC was developed, a
major challenge for scientists using other collections of autism genetic
samples was the lack of consistent and reliable collection of clinical data3.
Singh                                                                        71

 Further, the heterogeneity of autism symptoms and lack of clear and dis-
 tinct clinical phenotypes (traits) makes research on autism genetics chal-
 lenging. Thus, the SSC sought to collect detailed, valid, and reliable clini-
 cal data so that scientists could make meaningful genetic correlations to
 autism phenotypes. To achieve this level of integrity in the clinical data,
 the SSC evaluated the autistic child with a battery of diagnostic measures
 and standardized instruments. SSC clinicians were also trained by a set of
 expert clinical psychologists and each diagnostic evaluation was validated
 every quarter. This rigorous approach to measure autism symptoms was
 taken to ensure that each SSC site was uniformly collecting the clinical
 data. As indicated below, this level of detail also served in the interest of
 parents who were seeking an autism evaluation and services for their
 child. In the end, approximately 6,000 phenotype variables were collected
 from each family (SFARI nd-a).
     The challenges of accomplishing the ambitious goals of the SSC were
 evident from researchers and coordinators involved in the initial stages of
 recruiting families and collecting data. Although the rigor and uniformity
 of the data in the SSC sets it apart from other autism genetic databases,
 establishing this type data was challenging for SSC collection sites. In
 2008, when I was first inquiring about the project, one SSC coordinator
 expressed to me how many of the investigators were dismayed and frus-
 trated by the ‘corporate’ or ‘business-like’ structure of the project. Re-
 searchers working at these collection sites did not feel comfortable with
 the strict inclusion criteria and felt some families were getting overlooked
 that may be of importance to the collection. Any resistance to the strict
 inclusion criteria had consequences. I learned that one clinical research
 site was dropped and no longer funded by the Simons Foundation be-
 cause of conflicts over diagnostic procedures and whether a child met the
 inclusion criteria. One coordinator compared the SSC recruitment pro-
 cess to a pharmaceutical clinical trial rather than a clinical research study
 on autism, since clinical trials typically require strict guidelines for inclu-
 sion in order to show very small clinical significance of drug effectiveness.
 In this sense, the construction of the SSC was developed with strict inclu-
 sion criteria to identify specific and rare genetic pathways of autism,
 which could subsequently be therapeutic targets or at the very least reveal
 “clues that could lead to important breakthroughs” (SSC recruitment fly-
 er, 2010).
     It was also evident from interviewing researchers involved in collect-
 ing data for SSC that creating the collection was a major investment in
 time and money. On average, it took at least two months to recruit and
 evaluate the families, which made the strict exclusion criteria a point of
 concern, especially when each group was held accountable to meet their
 quota of 20-25 families each quarter. These efforts reflect a different type
 of clinical labour (Mitchell and Waldby 2010) that extends beyond par-
 ticipation in genetics research to include the time intensive and stressful
 processes experienced by study personal who were required to work un-
72                                                           Tecnoscienza – 9 (2)

der strict guidelines and timeframes to meet research obligations.
    In addition to the simplex family structure and detailed clinical char-
acterization of the sample, the range of biological materials available to
researchers offers extensive possibilities for scientific investigation and
hence, biovalue. According to the SFARI website there is a variety of SSC
biological materials for sale that scientists can purchase and use for their
research, including DNA, plasma (a liquid form of blood), and lympho-
blastoid cell lines (cell lines that live indefinitely). The technoscientific
transformation of all SSC blood samples into lymphoblastoid cell lines is
deemed extremely valuable for science because these immortalized cell
lines offer a renewable supply of DNA for future genetic studies. The
most recent biospeciman created are induced Pluripotent Stem Cells (iP-
SCs), which are cells derived from SSC blood samples that have “essential
properties” of embryonic stem cells. According to the SFARI website,
these iPSC cell lines can develop into brain cells and have become, “a
valuable model in autism research, complementing research studies in an-
imal models” (SFARI nd-c). The developments of these different bio-
materials are examples of how the SSC is being maximized through bio-
technical processes, where new forms of biovalue are being generated
through the various transformations of blood donated from SSC families.
    The SSC also provides genetic information generated from whole ge-
nome sequencing (WGS). This data is yet another micro-technical ma-
nipulation of productivity. Scientists have described the availability of
WGS as the next frontier of scientific trajectories of the SSC and genomic
science more broadly. In August 2017, SFARI announced that a total of
8,975 whole genomes from the SSC have been sequenced, most of which
are currently available for use by all approved researchers (SFARI 2017).
In addition to WGS, numerous other SSC genomic and transcriptomic
data sets (e.g., RNA transcripts that are produced by the genome) are
available for use by scientists. These genomic products are highly valued
by scientists given the computational power that can analyze and inter-
pret the data, as well as the seamlessly endless types of experiments that
can be conducted using genomic information. As the SSC biomaterials
remain available and continue to mutate, the future technoscientific trans-
formations will undoubtedly create new and extended forms of scientific
biovalue. This reflects Mitchell and Walby’s (2010, 340) articulation of
how biovalue is embedded in the biological samples themselves, where
they “can be retained and repeatedly minded for a variety of research,”
and “potentially open to new techniques, methods, and research ques-
tions that develop in the future”. Indeed, the SSC has this potential
through these various technoscientific products, which is harnessed by
the ability for scientists to remain in contact with families to collect addi-
tional biospecimans as needed; a contour of biovalue which I discuss in
more detail below.
Singh                                                                               73

 5.2 Social Biovalue: Diagnostic Currency and Genetic Answers to
    Autism

     Accounting for and articulating the contours of biovalue constitutes
 not only the people who are involved in the collection and use of the SSC
 but also those who donate their blood and medical information. As
 Mitchell and Waldby (2010, 341, italics in the original) importantly point
 out, “both biobank managers and biobank participants are involved in
 formatting the data necessary for the bank’s creation of value. In this sec-
 tion, I investigate how parents place value in the SSC, which is related to
 their decision to enrol their families in an autism genetic database. Based
 on interviews with parents who participated in the SSC, a different set of
 biovalues emerged starting from the initial participation and need for an-
 swers to the anticipated outcomes of genetics research using the SSC, es-
 pecially for the causes and treatments of autism.
     The clinical labour involved in donating blood and medical infor-
 mation to the SSC consisted of two visits to one of the affiliated university
 clinics, where participants completed an extensive parent interview and
 evaluation of the child with ASD in addition to a blood donation from
 each family member. As I discuss elsewhere (Singh 2015) there were dif-
 ferent narratives of participation from the perspective of parents who do-
 nated their family’s blood and medical information to the SSC (e.g., altru-
 istic, obligated, and diagnostic parents). When viewed through the lens of
 biovalue, however, immediate and long-term benefits are evident in the
 data. First, the compensation for participation was a written research re-
 port that included information about the child’s diagnosis, cognition and
 adaptive behaviour, and recommendations for treatment. This diagnostic
 evaluation is a significant incentive since parents have to wait over a year
 to see a specialist who can accurately diagnose ASD. Further, the cost of a
 psychological evaluation is well over $2,000, which many parents have to
 pay out of pocket since it is not typically covered by health insurance in
 the U.S. The parents were encouraged by the SSC research teams to use
 this evaluation to help qualify for services. Thus, for some parents, espe-
 cially those who did not have an extensive clinical autism evaluation for
 their child, participation in the SSC offered what Singh refers to as diag-
 nostic currency (2015). This currency took shape in many forms beyond a
 free diagnosis. First, a clinical diagnosis offered medical and social legiti-
 macy for concerns parents experienced with their children. As one parent
 stated:

        As a parent, when it’s your child, you just want the answers. (SSC parent
        interview #16)

    Parents indicated that it was extremely stressful to be so worried
 about their child and not know whether something was truly wrong. An-
74                                                               Tecnoscienza – 9 (2)

other parent whose son was never formally diagnosed before the study
stated:

     That's what we wanted first and foremost was somebody to say, okay,
     look, he's autistic. And then tell us what level he's capable of operating
     at…and you know, evaluate him and kind of help us figure out…the ser-
     vices that he needed. (SSC parent interview #14)

    These parents wanted to know with certainty whether their child was
on the autism spectrum and assumed that the detailed autism evaluation
they received in exchange for participation in the SSC would allow them
to seek the most appropriate care for their child. This is reminiscent of
research on medically unexplained symptoms (Dumit 2006) and the un-
certainty of non-diagnosis and questioning of others of the legitimacy of
concerns, which can create significant doubt, distress and chaos. It is evi-
dent that these parents clearly wanted to close this gap of uncertainty
through their participation.
    The extensive evaluation also provided a gateway to autism services,
which offered a second kind of diagnostic currency. For example, one
mother who had twin boys diagnosed with autism was hoping that the
thorough evaluation would help her obtain educational services. She stat-
ed:

     I have been paying for evaluations for years and I’ve been struggling with
     my school district for years and any opportunity to have a good independ-
     ent evaluation was something I jumped all over. (SSC parent interview #3)

    This parent, like many others, viewed the SSC as an opportunity for
her children to get a thorough autism assessment that would be helpful as
she negotiated with the school district about qualifying and receiving spe-
cial educational services. The detailed and free evaluation served as a bar-
gaining document or form of currency in exchange for educational ser-
vices. However, as I have highlight elsewhere, for some parents this doc-
ument was not made available immediately and the interpretation of the
results were hard to understand (Singh 2015).
    Beyond diagnostic currency, parents also saw value in a large multi-
sited study that was seeking answers to the questions of autism causation
and treatment through genetics research. One of the first families to par-
ticipate in the SSC who had a teenage son graduating from high school
stated:

     We were really excited to be a part of it just because I still don’t know
     why Carl has to deal with this daily and I’d like to know; it would bring
     closure. (SSC parent interview #21)
Singh                                                                               75

     Given the promotional nature of the SSC, many parents anticipated
 that the study would provide a genetic answer to autism causation, which
 in their minds would lead to targeted treatment. As one parent stated:

        I am very interested in having scientists find out more about autism if
        there is some genetic link, make any advancements, and make it easier for
        the lives of these kids. (SSC parent interview #8)

    Likewise, another parent was hoping that the database was going to
 help scientists:

        Narrow it down and identify where some of the deficiencies are and it
        may be something that in the future they can impact. (SSC parent inter-
        view #3)

     Parents did not speak of commercialization of the SSC or economic
 value gained from drugs and/or interventions developed from the data
 but were rather more optimistic and hopeful. It was almost as if by virtue
 of their donation the knowledge generated from the SSC would be made
 readily available to them in the future. Such economies of hope extend
 beyond a therapeutic cure or economic wealth to include how therapeutic
 benefits derived from biomedical research involving the donation of hu-
 man biomaterials should be distributed (Novas 2006) Through these ac-
 counts we also begin to see how the realization of value stem from what
 Hoeyer (2016, 352) refers to as “nonknowledge,” where the “research
 questions themselves perform work similar to the one usually ascribed to
 certified answers and research results. Beyond the realization of financial
 and knowledge assets, these parents are relying on the expectations of the
 SSC to find the underlying genetic cause of autism and in a few parent
 accounts, possibly a cure. Thus, these participants are what Tutton (2007)
 refers to as “active recruits,” since they are deeply invested in the antici-
 pated outcomes of the research and enthusiastically sought participation
 to help out in any way possible.

 5.3 Biovalue Constraints and Consequences

     Although different contours of biovalue are evident in the domains of
 scientific research and parent participation, I want to reflect for a mo-
 ment to account for the constraints in these multiple formulations of
 biovalue. This section offers a critical analysis of constraints and conse-
 quences inherent in the structure of the SSC, which creates certain kinds
 knowledge flows and nonflows to borrow from Hoeyer et al. (2017).
 However, the nonflows in this case refer to the constraints in knowledge
 production that are embedded in what makes the SSC valuable, namely
 the simplex family structure, distinct definitions of autism, and strict re-
 cruiting mechanisms. Although appealing for scientists, the simplex fami-
76                                                            Tecnoscienza – 9 (2)

ly structure is extremely limiting and embedded with inherent biases.
First, it limits participation to only biological and heterosexual parents,
which excludes many alternative family structures, e.g., parents who
adopt, same-sex parents who adopt or have biological children, or single-
parent families with no contact to the other biological parent of the child
with autism. Although the strict inclusion and exclusion criteria is war-
ranted given the goals of the SSC, the exclusion of these families limits
not only the type of knowledge produced (e.g., de novo CNV
knowledge), but also the potential benefits the study offers to families
that participate (e.g., extensive autism evaluation). The prospective inter-
ventions will also presumably be made with this family structure in mind,
and therefore likely be developed under the assumptions that families are
heterosexual, middle class, and have access to healthcare, not to mention
the time and resources needed to navigate autism services.
    In addition to the limits of participation based on family structure, the
families who participated in the SSC were predominately affiliated with
one of the twelve research clinics that were recruiting families to partici-
pate. This creates additional structural exclusions since there is well-
documented evidence to support disparities related to autism clinical ser-
vice access based on race, ethnicity, and social class (e.g., Liptak et al.
2008; Magana et al. 2013). These disparities are additionally evident in
the SSC, which underrepresents race and ethnicity of children with au-
tism in this sample comprising of less African Americans (~4%) and His-
panics (~11%) compared to the 2016 U.S. Census (13.3% and 17.8%,
respectively). White families, who represent 76.9% of the U.S. Census, on
the other hand, comprise ~78% of the SSC (SFARI Base nd-a). Social
class, measured by annual household income, also shows that the SSC is
composed of mainly middle class ($51,000 - $100,000, 39.6%) and upper
middle-class families ($101,000 to >$161,000, 38.9%) (Goin-Kochel et al.
2015). I do not mean to suggest that racial and class categories should be
represented in the SSC to provide evidence for disparities based on bio-
logical differences, but rather aim to call attention to how this nonflow of
knowledge obscures the understanding of upstream processes of unequal
access to autism services (Epstein 2007). These demographics represent
the inherent bias of the types of families who compose the SSC, which is
likely a result of the structural constraints of accessing clinical autism ser-
vices as a function of social class, which historically is associated with
race, as African Americans are disproportionately working class and poor.
In this case, people with limited financial resources are less likely to have
access to autism clinical services, much less time to participate in re-
search. This is important because it also limits access to the diagnostic
currencies mentioned above, as well as the opportunity to be part of the
virtual community of SSC families, which in addition to providing up-
dates on research generated from the SSC samples, offers a range of addi-
tional information that would be beneficial to most families who have a
Singh                                                                     77

 child with autism (e.g., employment, technology use, parenting strategies,
 etc.).
     The SSC also consists of an over representation of male children with
 autism where males with ASD constitute 86.4% of the samples (Goin-
 Kochel et al. 2015). Although this bias reflects the ASD estimate of Amer-
 ican boys who are 4.5 times more likely to have autism compared to girls,
 the SSC male to female ratio of children with autism is 6.5:1 (2292 males
 and 352 females). Not only does this imbalance place more emphasis on
 investigating male autism cases but also reinforces the notion that autism
 is a representation of the ‘extreme male brain’. This theory of autism
 promoted by Simon Baron-Cohen, an autism researcher at Cambridge
 University and current president of the International Society for Autism
 Research, attempts to explain the similarities between male traits and
 traits typically associated with autism (Baron-Cohen 2002). Again, these
 assumptions are built into the SSC and hold particular value for scientists.
 If the gender bias were in the reverse direction, e.g., female to male ratio
 of 6.5 to 1.0, the utility (and value) of the SSC would be questioned by
 scientists. Perhaps even more concerning in the context of this unequal
 representation based on sex is how the division in ASD based on sex is al-
 ready translating into studies that are investigating gender differences in
 ASD characteristics (e.g., Frazier et al. 2014; Howe et al. 2015). These
 studies aim to identify differences in autism symptoms (e.g., behavioural
 symptoms, cognitive functioning, verbal ability) between males and fe-
 males. Most troubling is the notion that these differences are rooted in
 genuine biological differences between males and females when it comes
 to behaviours such as “higher levels of irritability and externalizing be-
 haviour in female patients,” which could imply according to scientists,
 “the need for greater monitoring of behaviour problems in female pa-
 tients with ASD” (Fraizer et al. 2014, 701). These limitations and gender
 biases in the sample, while valuable based on scientific assumptions of au-
 tism causality and sex differences, inevitably shapes the kinds of resources
 available for scientific research and the subsequent knowledge produc-
 tion and flows. In the case of sex differences in autism, the database and
 subsequent knowledge is built on social norms that promote the gender
 binary, as well as distinct characteristics deemed male over female (Ep-
 stein 2007).

 5.4 Digital Biovalue: Interactive and Virtual Networks of Ex-
 change

     A third contour of biovalue manifests through digital networks that
 enable the purchase and flow of biological, clinical and genomic data be-
 tween scientists conducting autism research and the Simons Foundation
 Autism Research Initiative (SFARI), the governing body of the SSC. Digi-
 tal networks bring additional value to samples like the SSC since they es-
 tablish shared databases, which can allow researchers to access the data
78                                                           Tecnoscienza – 9 (2)

remotely. The organization and configuration of the SSC as a network bi-
obank (Canada et al. 2015), where governance of biomaterials is central-
ized by SFARI, highly influences the needs for multiple ways of engaging
with the SSC. Thus, SSC families who donated their blood and medical
information are also brought into this digital network of exchange. These
digital and virtual interactions bring scientific sustainability to projects
like the SSC but also generate new forms of biosociality among the fami-
lies who were brought together because of this highly selective research
initiative. These virtual interactions take on different shapes and forms
depending on how they are used and offer examples of emergent hybrid
collectives that sustain and promote evolving species of biovalue.
    To maintain and exchange the extensive materials offered by SSC, the
Simons Foundation developed SFARI Base, which is a central database of
clinical and genetic information of all SSC study participants. It contains
over 6,000 phenotypic data points for each SSC family and almost 9,000
whole genome sequences, which researchers can explore remotely before
requesting samples (SFARI Base nd-a). This digital portal enables scien-
tists to request samples for their research after they sign up and qualify as
an approved researcher, a process that requires a lengthy application, In-
stitutional Review Board compliance, and approval by the Simons Foun-
dation. All approved researchers must also agree to the specific use of the
SSC materials, which are limited to projects related to “advancing the
field of autism and related developmental disorder research” (SFARI nd-
a). According to the Researcher Distribution Agreement, approved re-
searchers are also prohibited from using the SSC materials for commer-
cial purposes and required to share all “Researcher Generated Data”
within a reasonable time after generation or collection (not to exceed one
year) (SFARI nd-a). The scientific practices of open data exchange before
publication of results was instituted by autism parent advocates when
they developed the first autism genetic database, the Autism Genetic Re-
source Exchange (Singh 2016).
    Establishing an account with SFARI Base is also the starting point for
researchers who would like to re-contact SSC families to collect addition-
al data. To qualify, SFARI must approve every scientist before they are
put into contact with a liaison to the SSC families. The ability to re-
contact SSC families is particularly important for scientists because of the
changing dynamics of genomics research that continuously creates new
knowledge and categorizations of people based on individual or family
genotype and/or phenotype data. Once particular SSC genotypes or phe-
notypes are identified as worthy of further investigation, additional clini-
cal data or samples of extended family are typically needed. This ex-
change network generates future use and indefinite value in the SSC by
enabling scientists to not only ask new questions of the data but also gain
access to additional biomaterials and clinical information needed to test
new scientific investigations.
    Although re-contacting families was one of the goals in developing the
Singh                                                                      79

 SSC, initially there were no mechanisms in place to accomplish on-going
 communication and recruitment for additional studies with SSC families.
 In 2013, two years after the data collection was completed for the SSC, a
 digital network of SSC families across North America was established, the
 Simons Simplex Community@Interactive Autism Network (SSC@IAN).
 The SSC@IAN was developed to serve as a conduit for connecting SSC
 families with scientists who wished to collect additional data from SSC
 families. The 1,500 families who agreed to sign up were willing to be re-
 contacted by SSC investigators to provide additional blood and medical
 data when needed. This platform has created an on-going form of ex-
 change between a sub-group of SSC families and scientists who want to
 collect additional data in order to ask a different set of research questions
 not originally conceived in the initial data collection. Initial and on-going
 participating in the SSC is a form of what Mitchell and Waldby (2010) re-
 fer to as distributed and extensive forms of clinical labour. Meaning that
 the small amount of “productive work” is dispersed across many SSC
 families (e.g., 2,700 families) and extensive through the on-going engage-
 ment through both the biomaterials and clinical information already har-
 vested and transformed for scientific production. In the SSC, the clinical
 labour is also extended through digital networks that enable continued
 collection of participant data. This adds another dimension of embodied
 work performed by SSC families.
     A third digital network of exchange is a public website that accompa-
 nied the SSC@IAN. This was designed as a virtual home for all SSC fami-
 lies (not just those who agreed to be re-contacted) to remain informed
 about the scientific results derived from their samples, to learn about dif-
 ferent families who participated in the SSC, and to access scientific arti-
 cles on autism (SSC@IAN nd). Additionally, it provides articles on the
 latest autism research beyond the SSC and webinars on a range of autism
 topics that would be of interest to North American families who have a
 child with autism. To some degree the public website offered through
 SSC@IAN helped to establish a form of biosociality between SSC partic-
 ipating families. The website does this by sharing stories that highlight
 families who participated in the SSC. The Maclean’s, for example, were
 the first family to sign up to be part of the SSC@IAN and their story em-
 phasizes how participating in SSC “was the best way [they] could help
 others who are walking the same road.” The story offers a detailed ac-
 count of participating in the SSC through the words of the mother, who
 recalled the meltdown her son had when his blood was drawn. Despite
 the long day and trouble with the blood draw, the mother viewed her par-
 ticipation as scientifically important by stating, how her son’s blood sam-
 ple, “together with those provided by the other SSC families, is part of
 one of the most important resources in autism research” (SSC@IAN
 2011). These sentiments of value and belonging to a community were also
 central themes among the interviews I conducted with families who par-
 ticipated in the SSC. One mother (SSC parent interview #5) shared with
80                                                          Tecnoscienza – 9 (2)

me that she viewed her family’s participation in the SSC as a “moral re-
sponsibility” because it would not only help her son but would also bene-
fit the autism community; families like her own who are going through
the same struggles. Based on this interview and others, the very act of par-
ticipating in the study and being involved in SSC@IAN created a collec-
tive social benefit for these families because it was not only tied to the
value the collection offered the scientific community but also the autism
community more broadly. These parents anticipated impactful scientific
and social SSC research outcomes that would address major issues facing
all autism families such as identifying the genetic cause autism and a clear
pathway to helping their children. In this register, participation in the
SSC as one parent told me, “benefits everybody, all the way around”
(SSC parent interview #4).
    In addition to personal accounts of participating in the SSC, the
SSC@IAN also provides a list of short reports that highlight studies made
possible by SSC families. This serves as another embedded form of
biovalue and an alternative way in which biosociality is extended through
this virtual exchange network. The introductory paragraph to the list of
reports states, “this is autism research made possible by you” (SSC@IAN
nd). These reports are based on SSC scientific research and draw on per-
sonal stories such as a parent’s reflections of the bullying and isolation
that occur or the social impairment associated with limited sleep in chil-
dren with autism. Stories like these and many others are used throughout
the reports covering SSC research in the SSC@IAN public website. Shar-
ing these stories unite SSC families beyond their presumably shared ge-
netic mechanisms of autism causation (e.g., CNV mutations) and extend
to daily experiences and validation of challenges that families who have
children with autism might be undergoing. The use of these narratives al-
so appears to give legitimacy to parent concerns, which in a few cases
(e.g., effects of a high fever) are now being investigated using the data
available through the SSC. In this register, the knowledge SSC families
are able to share with scientists through this virtual exchange highlight
new avenues for autism research.

5.5 Selective Non-Flows of Knowledge

    A closer analysis of these reports, however, shows that SSC@IAN
public website is selective in what is shared with families. Only 19 studies
appear in SSC@IAN out of the 78 studies that have been published using
the SSC data thus far. According to the SFARI Base website, 197 studies
have been approved to use the SSC sample (SFARI Base nd-b). This
clearly reflects an imbalance and selective representation of research re-
ported on the SSC@IAN. Not surprisingly, research findings that have
much more practical applications for SSC families are typically highlight-
ed (N=13) compared to genetic studies (N=6). For example, studies
about aggression and ASD, the stigma and isolation experienced by fami-
Singh                                                                         81

 lies of children with ASD, or sleep problems linked to autism, are the
 kinds of research reported to SSC families. The gap in reported studies
 through SSC@IAN compared to the large number of studies published
 and approved to use SSC samples is a reflection of the initial priorities of
 the SSC, which were not necessarily designed to identify practical appli-
 cations for SSC families and the broader autism community. It also repre-
 sents what Hoeyer et al. (2017) refer to as strategic ignorance, where
 some aspects of research are not revealed to research participants because
 they are expected to dislike them. In the case of SSC, the planned non-
 flows of information are the exclusion of the majority of studies that are
 less likely to directly benefit families. It also assumes that families are def-
 icit in the knowledge needed to understand the complexity of genetics re-
 search.
      Based on this analysis, I do not know why only certain research publi-
 cations are summarized and made available to families. One interpreta-
 tion is that the SSC@IAN is strategically filtering what is available to fam-
 ilies to give the illusion that the research conducted using the SSC directly
 benefits SSC families and children with autism more broadly. Another
 form of nonflows are the recommendations made through these reports
 to families that are not particularly novel. For example, recommendations
 made by the study investigators for aggressive behaviour include “the
 need for interventions to address aggression in children with ASD, and to
 support families coping with it,” or to address family obesity by focusing
 “on finding ways to be active together and cope with stress without eat-
 ing” (SSC@IAN nd). As I discussed above, the knowledge produced and
 recommendations given are bound within the constraints of the sample,
 which is largely white, married couples of higher socioeconomic status.
 Therefore, the practical applications of these findings may only benefit
 families who are situated within these social locations, since they are more
 likely to have the time and resources needed to acquire the long-term
 therapies (e.g., behavioural, speech, occupational) and/or special educa-
 tional services needed for many children diagnosed with autism. Further,
 the types of stress, access to healty food, and coping mechanisms are like-
 ly to be very different based on race and social class.


 6. Conclusion

     This study identified various contours of biovalue established through
 the development, participation, and use of the Simons Simplex Collec-
 tion, an autism genetic database designed to investigate specific genetic
 causes of autism, certain types of families, and characteristics of autism
 deemed most important for scientific research. Based on this analysis,
 there are clear representations of scientific, social, and digital forms of
 biovalue, which are multi-dimensional and co-constitutive of each other;
82                                                           Tecnoscienza – 9 (2)

enabling the exploitation of biovalue in multiple directions with the aid of
various technoscientific processes. Scientific biovalue was generated
through emergent genomic science that gave rise to the very idea of a
simplex family, namely the development and use of genomic technologies
that identified small micro-deletions (CNVs) that were associated with
certain kinds of autism (Singh 2016). This genomic research finding, mar-
shalled private funders to invest in a new autism genetic database that
would test the spontaneous CNV hypothesis. The distinct family forms
(simplex families) and detailed collection of clinical characteristics and
biological samples created a resource that was valuable for scientists and
families alike. The ability for scientists to re-contact families through the
SSC@IAN, collect and develop new technoscientific forms of data, and
conduct new scientific investigations allows for the expansion of biovalue
to travel to new spaces among this emergent assemblage of genomics re-
search. Social biovalue resides in the benefits of participation for SSC
families, who not only gain various forms of diagnostic currency, but also
have the opportunity to be part of the SSC virtual community. The op-
portunity to be part of this larger autism community allows families not
only to connect with each other, but also offers a linkage to the science
that is being produced with their biomaterials. Finally, the digital net-
works of exchange (SFARI Base and SSC@IAN) creates additional con-
tours of biovalue since it acts as a glue that creates the connectivity and
exchange between scientists, SSC families, and the extensive clinical and
biological materials.
    Within this context, I show how the SSC digital networks mediate be-
tween various social and material forms of the sample, updates and trans-
forms biomaterials continuously, and keeps track of the unfolding clinical
and genetic profiles of the SSC families. I contend that the productive re-
lation families have with the SSC resides in the ability for scientists to re-
main in contact with families through SSC@IAN, which enables new
signs, symptoms and experiences to continuously be collected, built upon
and connected to the knowledge produced from the SSC. As such, the
hybrid and multi-dimensional collectives between scientists, SSC families
and their clinical and genetic data combined with the emergent digital
networks designed to mediate these relationships and data flows gener-
ates a resource that can “mined” indefinitely. This positions the SSC to
have the potential to generate new biomaterials, genomic knowledge, and
research questions in the future, thereby offering promissory or specula-
tive value that holds much promise in genomic science that investigates
complex human conditions.
    The SSC also enabled new forms of biosociality to form among sim-
plex families whose children potentially have a spontaneous copy number
variation ‘causing’ their child’s autism. This collective identity manifests
through initial participation and on-going engagements with the SSC.
First, the SSC@IAN allowed families to connect with selective knowledge
being produced by the SSC using SSC family data, as well as learn about
Singh                                                                      83

 other families who participated. This sense of belonging to a unique sci-
 entific-based autism community was evident from the SSC parents I in-
 terviewed who viewed their participation as a way to be part of a research
 endeavour that will benefit the larger autism community, especially in the
 future. However, I provide evidence that the knowledge shared on the
 website was selective to studies that would be most useful for families
 (e.g., stigma and isolation); studies that were not part of the original de-
 sign of the SSC, and minimal in both number and value to genetic scien-
 tists. Second, the development of the SSC@IAN also created new oppor-
 tunities for families to remain engaged in the research process especially
 for those who agreed to be re-contacted by scientists who utilized the
 SSC for their research. This technosocial arrangement offers the potential
 for families to identify with the uniqueness of their child’s autism, relate
 to other SSC families, and engage in “artifice of modifying nature and the
 creation of social forms” (Gibbon and Novas 2008, 4). Undoubtedly, the
 SSC created new forms of biosociality beyond the shared experiences of
 raising a child with autism.
     This study also uncovers important paradoxes that highlight how the
 various contours and constraints of biovalue and biosociality work to-
 gether. First, the scientific biovalue embedded in the selective inclusion
 criteria and recruitment of families from clinical sites offering autism ser-
 vices in North America created at data set that is largely white and of high
 socioeconomic status. This is likely a function of who has access to autism
 services, and therefore eligible to be recruited to participate. It also sig-
 nals to larger structural inequalities such as limited access to private in-
 surance, living in poverty, and/or racial segregation that creates evident
 disparities to autism diagnosis and subsequent services (Singh and Bun-
 yak, forthcoming). A second paradox is how these social forms, as well as
 the different types of biovalue produced, are constituted based on the as-
 sumptions built into the SSC. Even though virtual modes of interaction
 were developed to bring SSC families together, which indeed created new
 biosocial communities, these collectives are strictly defined based on the
 priorities deemed most useful for conducting genetics research on autism.
 Thus, the ideas of autism genetic causation and the biomedical classifica-
 tion of autism shape the kinds of biosocial configurations that coalesce
 around the SSC. In other words, if a family had two or more children
 with autism or a family history of autism, they would not be included in
 these social networks and will also unlikely benefit from the genetic
 knowledge produced.
     A final paradox comes back to the fact that the SSC is an assemblage
 of people, biospecimen, clinical data, and technologies built on many as-
 sumptions about the potential genetic cause of autism and the predomi-
 nate characteristics associated with its definition. As I have articulated in
 this paper, while these characteristics created a “Cadillac resource” for
 autism genetics research, the limitations of the sample based on family
 structure, clinical characterizations, and representation in terms of race,
84                                                              Tecnoscienza – 9 (2)

social class and sex constrain the types of knowledge produced and the
potential future spaces in which this knowledge takes shape and travels.
Given that the SSC is the largest autism genetic database of its kind, the
knowledge produced will inevitably be a reflection of these assumptions
and constraints built into the SSC. This is concerning given the vast
amount of research using the SSC to investigate autism causation, treat-
ment and for much of the scientific thrust, an autism cure (e.g., almost
200 studies have been approved to use the SSC). While private philan-
thropies can bring funding and awareness to important social problems
like autism, there is no accountability to create a represented sample,
which could potentially limit the expansion of the data production and
flows to include research on structural issues faced in more heterogene-
ous populations experiencing autism.
    Given these analytic paradoxes evident in the contours and con-
straints of biovalue and biosociality, STS scholars engaged with these is-
sues are poised to think about the multi-dimensionality and co-
constitutive processes of these “bio” constructs. Further, we must begin
to use our critical STS lens to question how these values and subsequent
social formations come to be, who they benefit, and how these contours
shape and constrain the knowledge produced. Ultimately, these are criti-
cal questions of STS and we must pay attention to how heterogeneous
values are embedded in artifacts like the SSC and the implications this
has for what we come to know about complex human conditions like au-
tism and the primary beneficiaries of this knowledge.


Acknowlegments
I would like to acknowledge all the SSC families and researchers who participated
in this study. For the content analysis of SSC research, I am thankful to Karen
Gu. I would also like to thank Christine Hauskeller and Lorenzo Beltrame along
with the anonymous reviewers whose insightful comments and guidance created
an opportunity to develop the full potential of this article.


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    1 See Singh (2016) for a detailed account of the problems of previous
collections, namely the Autism Genetic Resource Exchange and the Autism
Genome Project.
    2
      This is different than a multiplex family that consists of two or more children
diagnosed with an ASD.
    3
      See Singh (2016) for history of the Autism Genetic Resource Exchange and
Autism Genome Project.
