That’s a question posed by Daniel at Genetic Future. He mentions an editorial from Nature, whose answer is, without equivocating, “yes.” A letter from a Spanish scientist entitled “How genetic censorship would harm everyone” responds to the editorial :
Better information allows better matching of people and jobs, and of people and insurance policies. The purpose of firms is to produce goods and services efficiently, and information helps to improve efficiency. The purpose of insurance is to manage risk, and information availability lowers risk.
Daniel quotes this to open for discussion. So, I’ll start some discussion. There are several problems with this line of reasoning.
I’m going to stick with the health insurance angle for now.
1. I am not sure how this is ‘censorship’ any more than not allowing people to access other medical records, or my credit history, or the contents of my cupboards without my permission or just legal cause is ‘censorship.’ This is a privacy right, not censorship.
2. Perhaps this comment is coming from a European point of view, but in nations without universal healthcare or insurance, such as the U.S. , open access to private genomic information would be devastating. Individuals in this country already are denied health insurance for some pretty minor ‘pre-existing’ conditions, or the cost of said insurance becomes out-of-reach. In a world of open access (to private genomic data) for insurance companies, insurance costs for most people, for the very things they need it for, would be impossibly high. In nations with universal health care or single-payer insurance, this is not as much a problem. You can see examples of this problem in the U.S. from the “Coalition for Genetic Fairness” in their publication “Faces of Genetic Discrimination.” (warning: pdf file, from this link on reasons GINA is needed)
3. “information availability lowers risk” only for the insurance companies, not for individuals. Insurance is actually based on spreading risk, as much as lowering it. In fact, insurance is based on ignorance. We don’t know if an earthquake will destroy our house, neither do our many neighbors. We could all save up in a savings account the cost of our house just in case our house is destroyed, or we could all put a much smaller amount into an insurance plan and spread the risk. Insurance is based on that ignorance of who will be hit. Of course there are some risks we take by building our house in San Francisco, so insurance is higher.. still, the risk is spread across households because of the uncertainty, the ignorance, of if, when and who an earthquake will hit.
4. It’s a catch 22 in a way. If genomic information is not private, individuals will refuse to be tested for fear of discrimination. If the promise of genomics (better diagnosis, prevention and treatment) is realized, than it would not be put into practice because people refuse to get tested (see link above). Thus health care costs will rise and remain high.
Though I understand the writer’s point of view to an extent, in the current U.S. system open access would lead to impossible costs and even more uninsured individuals with poor health care and/or the failure of the promise of genomics (and better prevention and diagnosis that would bring) as people refuse to get tested for fear of discrimination and said impossible costs. The U.S. is in an impossible situation as it stands, GINA is required to rectify that situation. And for this reason, OpenHelix is a member of the Coalition of Genetic Fairness.