It struck me that the Genetic Information Nondiscrimination Act (GINA), the flagship US law against genetic discrimination, signed by President George W. Bush in 2008, does not cover life insurance, disability insurance, or long-term care insurance.
In other words, in the US it’s still possible to be discriminated against for genetic reasons. How is this situation likely to change in the near future?
When I look more closely at it in the NIH factsheet for GINA it is stated that
As genomic medicine is poised to revolutionize medicine, patients will be able to utilize advances in genetic testing to create highly personalized care and treatment plans without fear of discrimination.
I have two main objections with that:
- The current level of protection is not near enough to dissipate the fears for people to ‘utilize advances in genetic testing’. The law itself states that GINA sets a ‘minimum standard’ but still does not cover some crucial scenarios where being discriminated against may be devastating (e.g. life insurance).
- If Direct-to-consumer (DTC) genetic testing is only going to be available via medical prescription, as many in the FDA are seeking to implement, does this approach help in any way the advancement of personalized health care? According to Misha Angrist , the top requestor for genetic tests in 2006 in the US was a Spa company; i.e. rich people with disposable income who wanted to understand their health risks. The impression I gather is that private demand is the main driver for DTC genetic testing and not the institutionalized health care. If the worst fears of DTC providers become a reality it may well be the end of an open, accessible, democratized personal genomics field as we now it. This does not take away the grave obligation DTC providers and relevant governmental agencies have to educate the public to ensure that they understand their results and that rigorous standards are met in reported findings.
It also strikes me that, in GINA, concepts like ‘privacy’ and the ‘right not to know’ are not even mentioned. My family and I chose to share our genotypes with the world, which should be as respectable as not sharing this data in the strictest sense. Both being open or protective of one’s genetic data should be an informed personal choice and not something imposed. I thus think this should be an important aspect that remains to be addressed at the juridical level.
In the NIH GINA factsheet it also reads that
Insurers cannot use genetic information obtained intentionally or unintentionally in decisions about enrollment or coverage.
To my mind this means that there is no restriction in collecting genetic information even though it cannot be used. I’ve heard say that some insurers may be collecting genetic data in anticipation of changes in laws that would allow them future use of the data.
Ignorance is the worst possible kind of discrimination
The need to educate the public and help them make an informed decision on genetic testing should remain the single most important priority by governments and regulatory agencies alike. Trying to impose on the public tight regulations on access to DTC genetic testing may create the wrong public opinion and backfire in the same way as GM food and crops did in Europe. Now is the time, when opinions are still to be formed, to make people aware of what DTC can or can’t tell them about themselves. The worst form of discrimination I know is ignorance and only ignorance can lead to the wrong interpretation of test results. Perhaps the solution does not lie so much in restricting access to DTC genetics testing as it is in helping consumers choose the right option for themselves.
 Here Is a Human Being: At the Dawn of Personal Genomics (2010) HaperCollins Books.