Experts Call For Federal Regulation Of Genetic Ancestry Testing
Imagine donating a sample of your DNA to help researchers study the genetics of diabetes. The disease is common among your friends and family, and you're proud of your role in finding out why. Now, imagine that some time later, you learn that your DNA has been used for other studies on topics you never expected — schizophrenia, human migration, inbreeding. Although your name isn't attached to the sample anymore, scientists are using your DNA to draw conclusions about your community and your ancestors. Some of these studies violate your cultural beliefs.That's what happened to the Havasupai Tribe of Arizona. In 2004, they sued Arizona State University, the institution that originally collected the DNA, for failing to provide ethical oversight on the use of the samples. The case is still working its way through the courts.
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As long as there is no name attached to the DNA that they are using to gather information other than what was reported..who cares. Studies are being done all the time, most of them are just dead ends but who knows the scientists may actually come across something that will benefit someone or everyone.
Well, since ther's no law actualy stating that the name must be removed, most will not comply. And, if there's a dollar to be made on it, will sell the data to others, including insurance companies which will turn around and charge you extremely high premiums just because someone in your family may have come up with cancer or some other disease. The human being always acts the same: given the opportunity of putting something to good or bad use, the bad use is usually the one which generates profit so that will be the prefered course of action. Take atomic energy for instance: it is a clean and renewable energy source. But it can also wreak devastation and cause many deaths. What was the very first use we chose for it?
I agree wholeheartedly with regulation, and a strict one at that. It is hard enough to get family members to agree to submit material for testing for genealogy purposes. Most refuse because of the uncertainty of "what else" will be done with their DNA without their knowledge or consent.
"Using your DNA to draw conclusions about your community and your ancestors. Some of these studies violate your cultural beliefs."
Cultural beliefs are legends usually not based on any facts, as opposed to DNA. Wherever a society's cultural beliefs are more important than facts, that society has major problems with reality. To name a few: talibans, the Israel-Palestine issue, Aryans in Hitler's days, War of Religions in Europe, the Monkey trial in the US, The Easter Island ex-population, etc etc
Common sense is always the least common thing around.