Comments on: One Big Happy Family Genome

By: Autism, Genetics, and Family: New Questions

Autism, Genetics, and Family: New Questions — Mon, 09 Jul 2007 10:45:37 +0000

[...] 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 [...]

By: nin_ers

nin_ers — Sun, 08 Jul 2007 20:21:54 +0000

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

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

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

By: NA

NA — Sun, 08 Jul 2007 17:38:16 +0000

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 are..so we can have an accurate database).

By: Kate

Kate — Sun, 08 Jul 2007 06:33:53 +0000

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.

By: NA

NA — Sun, 08 Jul 2007 00:31:08 +0000

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 – 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?