All opinions are my own and do not necessarily reflect those of Novo Nordisk
In the same issue of Nature that reported the HeLa sequence and the NIH agreement, Martin Bobrow of the University of Cambridge wrote a column discussing how we as a society choose to balance individual privacy and public good that arises from making data gathered from private samples public.
We are entering a strikingly different period of biological and biomedical research, as a number of different areas of research and technology are reaching a critical point of cross-fertilization. Moore’s law has resulted in computers of amazing power that can analyze really stupendous amounts of data. I was at the Seattle Museum of History and Industry recently, and in one of their displays they showed a 1980 IBM PC, and while showing it to my son, I pulled out my smartphone and told him that my phone today is just as powerful as that computer was. Of course, I was wrong. My phone is actually about 2.5 orders of magnitude more powerful than that PC. Continue reading →
All opinions my own and do not necessarily reflect those of Novo Nordisk.
A fair amount of reporting (for example here, here and here) has gone into the recent news that the NIH and the descendants of Henrietta Lacks have reached an agreement about the conditions under which the genome sequence of the HeLa cell line will be shared. The basic parameters are that researchers wanting access to the data will need to apply for permission, the application committee will include members of the Lacks family, any publications will acknowledge the contribution of the Henrietta Lacks, and future genome sequences will be submitted to dbGAP.
This is a generally welcome development, and in no small part due to the work of Rebecca Skloot. Her book, The Immortal Life of Henrietta Lacks provided the impetus to the current developments by popularizing the story of Ms. Lacks and the cell line derived from her tissues. However, this agreement also can be seen as a precedent of sorts, and the future implications for the ethics of consent, genetic information sharing and genomic research are unclear.
Whose genome is it, anyway?
In Pasco Phronesis, David Bruggeman penned a post on some of the possible implications. He discusses one of the key elements of genetic consent that I generally haven’t seen elaborated on much in the current literature: familial consent and exposure. To what extent do those who share part of a sequenced genome have a say in the granting and rescinding of consent for the usage of genetic information? Continue reading →