One Big Happy Family Genome

One Big Happy Family Genome

by Dr. Hsien-Hsien Lei
Posted July 7, 2007 in DNA and Disease, DNA and the Law, DNA in General

BMJ is featuring another debate on genetics in their July 7 issue – Should families own genetic information? You might be wondering what the heck this means. The question touches on genetic privacy and whether information on your genetic profile should be public knowledge or at least made known to family members who share DNA with you.

The impact of genetic information isn’t always limited to the individual. Genes are inherited from parents and shared with siblings and other relatives. Knowing the gene variant you carry could make it possible to infer those carried by your relatives as well.

family portrait

On the side of “yes, families collective own genetic information” is Anneke Lucassen a consultant at Wessex Clinical Genetics Service.

Where genetic information points to an intervention that would decrease the morbidity or mortality from a disease, taking an individual ownership stance could lead to harm in others. Take the following analogy. A company identifies traces of a contaminating, toxic substance in a batch of tinned beans after one woman develops symptoms. The woman owns her contaminated tin but does not own the other tins in the batch, which have the same chance of causing illness in others. The woman is entitled to privacy and patient confidentiality but cannot say that she does not want others informed of the danger; nor can she prevent disclosure on the basis that she owns the information about the poisoning.

On the side of “no, each person owns his/her own genetic information” is Angus Clarke, a consultant clinical geneticist at the Institute of Medical Genetics in Cardiff.

…I suggest that genetic information should be regarded as private and personal; to treat it as if it were owned in common by a body as vague and ill defined as “the family” is flawed. In the case of known disease causing mutations, however, the genetic information can be argued to belong to the laboratory or the health service that generates it and not to either the individual or the family.

I tend to agree with Dr. Clarke. It is wrong to assume that all family members have a strong bond and obligation to one another. We also cannot force people to take care of each other even if they are related and in fact, sometimes withholding information may be one person’s way of protecting their loved ones from stress with no hope of resolution.

This situation is particularly clear-cut for diseases that are caused by a single dominant gene with 100% penetrance (the presence of the disease gene always causes the disease). Huntington’s Disease is one such disease. If a currently healthy person tests positive for the gene causing Huntington’s Disease, it is easy to figure out that the gene was inherited from the parent with the positive family history. This parent’s positive status can easily be inferred from the child’s positive result. Family turmoil ensues if the parent had not wanted to know if s/he carried the disease gene, preferring instead to take life day-by-day never knowing if or when the disease might strike.

On the other hand, knowing one family member’s genetic profile may not necessarily lead to any additional genetic information about other family members when it turns out that they are not related after all. Testing can reveal secrets about family relationships, such as nonpaternity events, that would have never been known before. Fathers, mothers and children, or sisters and brothers may turn out not be biologically related at all. Or perhaps they’re related more closely than previously thought.

Genetic privacy is an issue involving government regulations, health insurance, and societal attitudes. But it is also an issue that affects families. None of us hold all the cards in the genetic deck. It’s easy to infer what we’re keeping close to the vest by the cards our relatives are holding.

If one of your family members had a genetic test that could potentially tell you something about your own genetic profile and risk of developing a disease, would you want them to tell you?

via Medical News Today

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Comment by NA

It might be good to have a full family genetic data at hand, but this data could be protected in the same way Biobanking is done. I personally think that this type of information should not be readably available for anyone in the family to use, but a document should be signed so if any misuse of the information is done, the person is held reliable legally. For instance, is it ethical for a person to own family data and sell the data for scientific research (assuming they get paid)?

One of the major points of knowing a family history is the knowledge for the next generation. The family history information should be available for the next generation (when they get old enough to understand the details) and parents should have the choice to have their children tested for genetic conditions. Is it economically worth testing people at random for any genetic condition in a mandatory process? NO! Is it economically smart for a family to know which genetic conditions run in the family so they can have personalized care? OBSOLUTLY! However, if a certain genetic condition runs in the family, not all members of the family will have the same severity of the disease. It gets even more complicated when dealing with multifactorial disorders.

Ethically a case can be made for the right for a person to own their own genetic information, but many generations of family history? Who determines which member of the family should own the information? If one of the family members owns the information, how should the process be taken care of when the person who owns the data passes away? Where does the ownership go?

Maybe a central database can be developed that is highly secured (which is very risky as you risk people hacking your DNA information) where people can log into the database to learn about their family history? I think this type of tool would be very powerful. Maybe even an analysis for each family can be done that explains which diseases and disorders are prevalent in a certain family and do risk calculations for the next generation. When a new generation is born, the information should be inputted into the database for that specific family (which is two families to be technical) and new analysis should be developed for the new generation â€“ if any new genetic condition arises during the life of this new generation child, it should be put into the database. Databases like this are already used in the legal system; why not use something like this in the medical field?

Comment by Kate

What about adopted children? Shouldn’t they be given a genetic map to protect themselves once they reach adulthood? When all experience and heritage has been stolen, DNA information might be the only link to a healthier future.

Comment by NA

We would also need to keep track of babies born by IVF to have all correct family histories in a central database. This means that the offspring will know who the parents were and I know this type of information is kept secret. A new process would need to be adopted in this situation (for being able to learn who the parents we can have an accurate database).

Comment by nin_ers

soy mantequilla vengan a ver tengo la fiebre me voy a morir.

Es verdad, que pasa con los niÃ±os adoptados?, ya sera otro linage del genoma humanistico no?

Tendran sus propias base de datos familiares, al igual que los judios.


[...] as we learn more about the genetics of autism, new questions arise, such as whether families should own genetic information?, as Hsien Hsien Lei asks Eye on DNA. What will be the impact of knowledge about autism and genetics [...]


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