President Weighs In on Data From Genes
The New Your Times
If you have genetic testing done on yourself by some company or a hospital, who owns the data?
Is that data yours, or is it their intellectual property? This is the main discourse of the article.
Researchers and universities argue the genetic information they collect becomes their intellectual property, while health care organization and consumer groups assert that the data and discoveries made because of that data belong to the individual from whom the DNA came from.The President sides with the latter. He believes that
"participants in genetic testing should be partners in the research that their cells enable"This would mean that patients receive access to genomic testing results done with their DNA, they would receive full access to their medical record. The remarks the president had about who owns what in genetics came about in a conversation about the Precision Medicine Initiative, which you can read more about here.
I'm with the Obama on this issue, I agree that those participating in genetic testing have a right to access the information about their genome.
This is a very interesting article, and always an even more interesting topic in the debate of ethics. While this article focuses on data from genetic testing, I think it is incredibly important to point out that this is a very common practice when specimens are sent to a lab for testing. Many people do not realize that if they have had a blood test, genetic test, or other tests like that, it is likely that the hospital or lab still has access to information from the specimen.
ReplyDeleteWhile this may make many people uncomfortable, it is equally important to remember that there are important medical breakthroughs that have been made in the past due to this practice. Henrietta Lacks had a culture of her cervical culture taken and, like many cultures, it ended up in a lab without her knowledge. Her cells (HeLa cells) would later prove to be 'immortal', leading to groundbreaking research in the medical field with the polio vaccine, AIDs research and much more.
I know that in most cases when you get some kind of testing done at a medical facility you need to sign off in order for them to keep record of your results and to study any cultures they take from you. I agree with you on the subject, our genes are one form of identification that we own. Our genes in the most biological sense are us, and if we cannot know what genes are present in us it can cause problems in the future. Medical and possibly for personal use depending on the kind of technologies that exist in the future. Our genes should be just as important as our ID's and Social Security cards and any other ways we can identify ourselves.
ReplyDelete