Hopefully, like all medical records, these will be confidential. Of course, with third-party payers like insurance companies, sdme medical information is divulged under condition of them selling you insurance (if I remember Medical Ethics correctly). The AMA (an organization which I do not always support) is petioning for stronger doctor-patient confidentiality rules – right now, police and government agencies with a warrant have the right to look at these. The AMA feels that this may destroy part of the relationship (for instance reduce the willingness of an illegal immigrant to come in for treatment of tuberculosis).
Hopefully, it will have consequences to right of access to genetic information.
We are already at this age. For example, an individual with Huntington’s disease has a 50% chance of passing on the disease to his/her offspring. This disease has onset in the mid-40s to 100% affected by the mid-50s, leading to psychosis and movement disorder. At diagnosis, it is an person’s right to tell or not to tell her children. This has all kinds of ramifications :
a) If the child is told and tested at 20 years old and tests positive, this gives him 20-30 years left to live.
b) If the child is positive and doesn’t know, he can pass it on with 50% probability. Since prenatal screening exists, this may affect the choice for termination/not having children.
We are talking of the far future here. Just like any medical procedure, you would have the right to refuse. It is just like nowadays you can refuse prenatal testing and prenatal vitamins to increase the health of the fetus. All this talk about genome science, however, takes out a big factor : environment. Most onset/progression of disease is not genetically predetermined. All genetics does is give us relative risks. For instance, if a person is genetically at risk for cancer, but leads a clean life and avoids risk factors like smoking and UV, the risk factors in some situations disappear. This is like asking if a smoker, knowing the risks of smoking, should pay for his treatment of lung cancer. The problem is, if you were to look hard enough, you would find disease genes in all of us. Nobody’s perfect.
As an MD/PhD student focusing on genetics, I hope to be in the forefront of designing genetic therapies. In 20-50 years, with increasing success of gene therapy and increased automation, these therapies will hopefully not only be incredibly effective but also far cheaper. They will be able to be synthesized in huge quantities cheaply by growing it in cell/yeast/bacterial culture. I see it as a great leveller. But, unless we find a reasonable public health care alternative in the USA, it will continue to be like any medical therapy. The most advanced therapies will first be availible to those who can pay for them.
I see this like surgery and cosmetic surgery. I think of it as “gene surgery.” Gene therapy will be designed to first and foremost take care of the most pressing problems - cancers, maybe heart disease, and congenital genetic disease, just like surgery started with Caesarian sections, field amputations, and sewing gashes back together. After gene therapy becomes old hat, the financial lure of genetically growing new hair may be too big to ignore.
Remember, we are talking about the far future here. We can barely manipulate the genomes of human cells specifically designed for growing in culture. We are so far off from most gene therapies (especially ones which would alter the heritable material in the sperm and eggs) that this is mostly wild speculation. The applications of the HGP that we are being bombarded with by the media are beyond our goals for the next 10 years.
With 50-100,000 genes in the genome, we will all find out that we are at risk for something. I hope this will not be a bad thing – we will be able to tailor our lives and our medical therapies to accomodate those risks. 1 in 3 get cancer. 1 in 2 get heart disease. We will die, even if the genome is 100% sequenced.