Personal genetics events are in the news. For less than $100 it is now possible to get a portion of your genome sequenced. 23 and me, a genetic testing firm is owned by Ancestry.com the company that provides genealogy information to the general public. Ancestry has become a staple in many public libraries. Finding one’s ancestors and where one hails from is all the rage.
Adding a genetic component to searches of graves, ship manifests and census documents has enriched the field as well as raised some concern about personal privacy. One of the issues with Ancestry’s genetic testing product is in the fine print that most people miss. This allows Ancestry to use the information from the genetic tests for medical experiments even if you opt out of the formal testing option. The opting out removes personal information but the aggregate information is not protected. All of the nuances are spelled out here in this article. The law has not necessarily kept up with the progress and innovations. Right now the main law protecting people’s information is GINA or Genetic Information Nondiscrimination Act of 2008 (Pub.L. 110–233, 122 Stat. 881, enacted May 21, 2008). This prohibits the use of genetic information in health insurance and employment. This is critical because if genetic information were allowed to be used for screening employees insurance companies would be able to rule pre-existing conditions just on the basis of one’s having or not having a particular gene. That could potentially affect almost everyone. Given the current healthcare debate as to what insurance should cover this is something to be closely watched.
There are many controversies in this broad, fast developing field. The book and movie, The Immortal Life of Henrietta Lacks demonstrated some of the unresolved issues about who owns biological and genetic material in medical procedures. Henrietta Lacks was a woman with cancer whose cells were harvested and then found to remain robust or “immortal”, providing material for thousands of experiments but providing no financial recompense for her family and initially no acknowledgement of the appropriation of her genetic material. The case wound up with agreements with the National Institutes of Health. As a result of the case her family now has approval over any experiments using the cells. They have also blocked the release of the full genome to the public (only available to researchers) thus protecting the privacy of the family in genetic matters. It remains to be seen as to how this sort of thing will play out for other people in the future. But unmodified human genes cannot be patented.
Some researchers are working with direct manipulation of human cells. So far many of the proposed modifications are directed at fixing genes with mutations that can predispose a person to a particular disease or condition. The FDA recently approved the first of this type of gene therapy in the case of a certain type of leukemia.
In what may be the most unusual developing use of DNA, scientists have been able to encode movies into DNA making the DNA into a recording medium (“Researchers store computer operating system and short movie on DNA”)
They were able to encode a short clip from Eadweard Muybridge into a five second video embedded in the DNA of a bacteria. Given that decodable DNA has been recovered from 430,000 year old bones found in a cave in Spain, the idea of using it as a recording vehicle is not so far-fetched. That time span is certainly longer than any thumb-drive is likely to survive. We may end up becoming the repositories of our own data. See the first movie uploaded to DNA of living cells – CBS News
If you are interested in exploring personal genetics further there is a local project that has information and curriculum materials across the entire growing spectrum of genetics. The Personal Genetics Education Project (PGED.org) at Harvard has developed an entire curriculum that is freely available and may be downloaded. Their project includes information for schools, congress, Hollywood, faith communities and a broad range of other communication avenues. They also offer professional development opportunities.by