I met many fascinating people in Minneapolis at Innovation 2008. One of them is Lynn Fellman, an artist who creates personalized portraits–and I do mean personalized. Her portraits are based on DNA sequences and mutation markers.
I’m ordering one–choosing to ignore that nagging inner voice cautioning me against this. “Do you REALLY want your DNA information to end up in the hands of scientists, insurance agents, future employers or worse–marketers!?” Lynn assures me my DNA will be kept top secret and remain nameless.
Hey, a couple of weeks ago, ten super smart people volunteered to donate their DNA to science. More from Scientific American:
Ten people allowed their genetic maps to be publicly displayed on the Web in the name of research. The effort is part of Harvard Medical School’s Personal Genome Project (PGP), which aims to create a large public database of human DNA to aid researchers in their quest to find the causes and cures for genetic maladies.
One of the participants explains how relatively inexpensive DNA sequencing technology works and why he believes this project has the potential to change the face of medical research.
While another argues that privacy issues may be a concern but that it’s overshadowed by the fear that insurance companies will refuse to provide coverage or will charge sky-high rates if aware that someone has a pre-existing genetic condition or risk of developing a certain disease.
Interested in having your health history and genes published online for the benefit of science? The project got approval this spring to expand the project to 100,000 people, and they’re looking for volunteers.
Hi Darlene,
I am a friend of Lynn Fellman, who directed me to your site. Lynn and I have had many conversations on DNA, genomics, etc. and more importantly to me, about her art and her approach to the subject. She told me how thrilled she was to meet you at the Innovation 2008 meeting.
Lynn directed me to your website where I saw the following:
I’m ordering one–choosing to ignore that nagging inner voice cautioning me against this. “Do you REALLY want your DNA information to end up in the hands of scientists, insurance agents, future employers or worse–marketers!?” Lynn assures me my DNA will be kept top secret and remain nameless.
Having established my ‘conflict of interest’ above, I encourage you to overcome your cautioning inner voice. Besides the total confidentiality of the way the Genographic Project works, DNA analysis only will be done on your mitochondrial DNA (assuming you have not had a transgender operation to appear the way you do) to establish deep ancestry. That said, all of your DNA will be in their files. It is possible that someday every single basepair could be sequenced. Even so, your name is never associated with the information because they never get it at all. Because they do not have any information on you, the sequences really would be of minimal use except in terms of finding out how many various allelic forms of any given gene there are.
More to your concerns, personal genomics rarely will provide much more information than what your personal/family history you give to your physicians. In fact, family history cuts through all of the problems associated with having multiple genes influencing a given condition. There are exceptions that I am sure you are aware of, e.g., particular types of breast cancer; but, even here genomics is sometimes only a rough guide for treatment.
I am writing this because biomedical science has an incredible potential.
But we have become so scarred of possibilities that are fairly remote and often not really that bad that we fail to take advantage of what we can develop.
YOU are a very influential person, hence this email.
GO FOR IT.