Monday, August 7, 2000
The blending of genomics with information and telecommunications
technologies falls under the hot concept of "convergence", and last week's unveiling
of the Gene Trust Project provided the latest apotheosis of the concept.
Indeed, the offer by DNA Sciences Inc. to allow altruistic
members of the public to donate free DNA samples to the company's profit-making
efforts manages to create a veritable stew of convergence, combining public
commonweal, pharmacogenomics, web-based data collection, cross-marketing with
Healtheon/WebMD, and a smattering of show business glitter.
The genotyping company last week launched its Gene Trust Project,
which it called a "consumer research initiative designed to discover the links
between genetics and common diseases." Visitors to the company's web site are
told that "this is nothing less than a chance to participate in history." And
show business personalities such as comedian Bob Saget (who lost a sister to
scleroderma) and actress Shelley Fabares (whose mother was an Alzheimer's victim)
were on the company's webcast talking about the importance of such research
(a role they played for free).
"A consumer research initiative" sounds like something that
might be run by an organization like Consumers Union, and DNA Sciences argued
that the initiative allows ordinary people to participate in genetic research.
But the enterprise raises two discomfiting issues that the company and industry
would do well to ponder: the first has to do with the way in which informed
consent is obtained, and the second has to do with who stands to gain.
Through its DNA.com website, DNA Sciences is soliciting personal
and family health profiles, which it pledges to keep confidential. If a profile
matches one of the company's disease-associated genotype database needs, that
individual will be asked to donate a blood sample. In this way, the company
hopes to gather large numbers of patients for association studies - according
to the website, DNA Sciences hopes to get hundreds of thousands of profile respondents,
resulting in thousands of blood samples.