by Dr. Hsien-Hsien Lei
Posted June 9, 2007 in DNA Testing, DNA and Disease, DNA and the Law, DNA in General, Polls About DNA
The US may soon be outlawing the use of genetic information to determine insurance eligibility but the debate still rages over at BMJ where biomedical ethics professor Richard Ashcroft supports the principles of the Genetic Information Nondiscrimination Act (GINA) while professor SÃ¸ren Holm does not. The UK currently has a moratorium on the use of genetic information for insurance underwriting but insurance carriers want to change this starting next year.
The question: Should genetic information be disclosed to insurers?
Prof. Ashcroft says “no” on the basis of unfair discrimination via potential misinterpretations of genetic information. He also argues that it’s a social injustice to punish those who’ve had the “ill luck” to inherit genetic mutations predisposing them to disease. (Of course, all of us carry genetic mutations predisposing us to disease and eventually, this will cease to be an issue.) The argument is that individuals with the bad luck to have disease-causing mutations deserve insurance even more because that’s what insurance is for – covering accidents.
Prof. Holm says “yes” to allow insurance companies access to genetic information because genetic information is no different from other data, such as pre-existing medical conditions or family history. He says that it is unfair to ask insurance companies to operate without a complete medical history since they need to be cost effective. (Although plenty of people withhold critical information precisely because they fear their premiums will skyrocket or they will be denied insurance completely.)
I say “no” to making genetic information widely available to insurers because information on my genes is not just about me. My genetic profile can give information about family members as well, especially my parents, siblings, and children.
Knowing the gene variant you carry could make it possible to infer those carried by your relatives as well. 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). Huntingtonâ€™s disease is one example. If a currently healthy person tests positive for the gene causing Huntingtonâ€™s disease, it is easy to figure out that the gene was inherited from the parent with the positive family history. This parentâ€™s positive status can then easily be inferred from the childâ€™s positive result.
What’s worse, asking for genetic information for one purpose can cause problems in other ways. 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. And what about when testing can reveal secrets about family relationships that would have never been known before? Fathers, mothers and children, or sisters and brothers may turn out not be biologically related or perhaps related more closely than previously thought.
How would you answer the question? Take the poll below:
Genetic Testing and Health Insurance in the New York Times...
Victory for Genetic Information Nondiscrimination Act (GINA)...
Genetic Information Nondiscrimination Act (GINA) Nears Unanimous Consent Passage in U.S. Senate...
Eye on DNA Links – June 12, 2007...
Using Disposable Income for Genetic Tests...
State Laws Governing Genetic Discrimination...
Eye on DNA Links – June 21, 2007...
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