In David Zindell’s space opera Neverness, the term “slel” is introduced to describe the misappropriation of someone else’s DNA. In a review of Zindell’s book, Orson Scott Card gives us the following definition:
Slel: To take DNA from someone against his will, to create avatars of him, or perhaps children.
Last week Hsien documented the recent efforts of UK police to make slelling a standard practice.
I’ve got two riffs on slelling for you: (1) genetic avatars and (2) DNA bubble gum.
First crop of critics of the Genographic Project have emerged. Here is an overview:
- involving the public may not be useful, involving the public is expensive, the volume of respondents may be surprisingly high (Andrew Paterson, a scientist at the genetics and genomic biology group at the Sick Kids Research Institute)
- control over sample collection is weak, self-reporting is often inaccurate, look-out for contamination of samples (Steven Scherer, senior scientist at the genetics and genomic biology group at the Sick Kids Research Institute)
- should have gone the extra mile and made a biobank of the DNA samples (Kenneth K. Kidd, professor of genetics and psychiatry at Yale Med)
- should have used DNA Genotek’s Oragene kit rather than buccal swabs (company CEO Ian Curry)
Sarah Lysecki. "National Geographic’s DNA database raises doubts" itbusiness.ca, 4/18/2005.
A group of genetic advocacy organizations have teamed-up to launch a biobank. From their webpage:
Seven genetic advocacy organizations established the Genetic Alliance
BioBank™, a repository for the standardized collection, storage and
distribution of biological samples and clinical data for research
purposes. This novel, advocacy-owned and -managed repository focuses
and accelerates research, providing infrastructure for many advocacy
groups to build a valuable resource. The Genetic Alliance BioBank™ sets
new standards for participant involvement in research, provides
standardized protocols, allows for ethical re-contact and robust
protections in the context of the communities served by these advocacy
organizations….Researchers who wish to receive samples submit an application to the
disease-specific advocacy organization. These organizations release
coded samples to the researcher and hold the key that connects specific
samples to individuals, offering a unique opportunity to enable
follow-up studies while protecting participant confidentiality. The
Genetic Alliance BioBank™ will help accelerate basic and translational
research and serve as an essential platform solution for applying the
tools of genetics, genomics, proteomics and metabolomics. The GA
BioBank™ will also provide an opportunity for cross-disease research
that may shed light on pathways and etiology for both common and rare
Genetic Advocacy Organizations that cofounded the Genetic Alliance Biobank:
Inflammatory Breast Cancer Research Foundation
Joubert Syndrome Foundation
National Psoriasis Foundation
NBIA Disorders Association
Noonan Syndrome Support Group
A new poll by PARADE/Research!America recently asked 1000 Americans what they think about genetic testing and biobanking. Here is a brief summary of a couple key findings:
Q: "Would you be willing to be genetically tested to help doctors diagnose and prevent disease?"
A: 57% yes
Q: "Would you be willing to contribute a sample of your DNA to a national databank to be used only for health related research?"
A: 48% Yes
Q: "What concerns, if any, do you have about genetic testing?"
A: 39% No concerns
~15% concerned with misuse/abuse of info
~15% either "don’t know" or "don’t understand"
~11% are concerned with privacy
In the grand scheme of things, how much does current public opinion of these issues really matter? Luckily, there is a real-life case study unfolding in Iceland that should be instructive in answering this question. In his editorial in the September Technology Review, David Rotman had this to say about the force of public opinion in shaping the success of the Icelandic biotech DeCode Genetics:
"The beginnings of deCode, however, were mired in controversy, most of it centered on worries over privacy and a general unease about granting a single biotech company ownership over a population’s genetic legacy (see “Your Genetic Destiny for Sale,” TR April 2001). The good news…is that almost everyone…in Iceland, from cab drivers to patients, now embraces the effort. What’s more, the experiment seems to be working: deCode reports its pipeline is bursting with potential drugs…
Revisiting [the DeCode Genetics] story yields a few clear lessons. First, a country’s public attitude to technology does matter. Second, and just as important, given the right climate, public views can evolve. Efforts comparable to deCode’s in the United States and the United Kingdom met similar fears and were either quickly shut down or, as in the case of the U.K. Biobank, slow to get off the ground. (The U.K. Biobank now says it will get fully under way in September 2005.) To their credit, the people of Iceland dealt with the issues, compromised, and efficiently pushed ahead with what many now recognize as vitally important medical research. Perhaps it was a courage in the face of the unknown inherited from Viking ancestors."
Ralph Snyderman of Duke University sees a related problem with attitudes toward genomics in medicine: thinking of it too much in terms of the next era in medicine and not enough in terms of here and now. In a recent Parade article, Dr. Snyderman had this to say:
"People think that genomics will have an impact in their children’s lifetime, but it is happening now. I urge them to rush to take advantage of it for the sake of living longer, healthier lives."
PARADE/Research!America poll results
David Rotman. "Getting the Whole Story." Technology Review. September 2004, p.7 (subscription)
See the Duke Prospective Health Program
Here are some other findings from the poll worth mentioning since they will surely blow the minds of historians in 50 years:
Have you ever used email to communicate with your doctor or health care provider?
Have you ever asked your doctor or another health professional to let you see your medical records?
How useful would it be if you could look at your personal medical records online?
50% Not useful or don’t know