Experts discuss impact of genetic research
By Edward Chiao
Jan. 27, 2003 9:00 p.m.
The social impacts of the genetic revolution are closer than we
think, according to the UCLA Center for Society, the Individual and
Genetics.
A handful of genetics experts from around the world gathered in
front of over 350 people at UCLA’s Covel Commons last Sunday
to raise and explore these very questions about the future of
humans and genetics.
The day-long public symposium, called the “Storefront
Genome,” was sponsored by UCLA’s CSIG, which was
founded in September of 2001.
The center was created to mediate the debate between individuals
and society in order to better understand and implement the
information resulting from the genetic revolution.
“This is the Manhattan Project of biology,” said
UCLA Chancellor Albert Carnesale, who addressed the audience at the
start of the day. “… We need to get it right.”
Experts widely agree that within the next 10 years, society and
individuals will face issues involving genetic engineering for
disease prevention, solutions about aging, development of
genetically modified foods, and possibly human cloning.
Individuals also will be able to obtain a comprehensive genetic
profile of themselves for around $100, according to CSIG. The same
person can sequence his or her genome for roughly $1,000 ““
compared to today’s average cost of $650,000.
“The implications of the genetics revolution are profound,
and it is critical to consider the impact of this technology on
society and its members,” said Dr. Edward McCabe, chair of
CSIG and executive chair of the UCLA Department of Pediatrics.
In the near future, the health care industry will develop the
ability to predict, prevent, and provide medical care on an
individual basis.
The symposium addressed this ability and the moral and medical
issues surrounding the knowledge of predictive medicine.
For instance, would parents really want to know if their child
is genetically predisposed to an incurable disease?
“(This is) the biggest window into who we are, and we are
drawing back the curtain on that window,” said Gregory Stock,
who moderated the event. He is the director of UCLA’s Program
on Medicine, Technology and Society and a visiting professor.
“There is no consensus about all of this. We cannot coil
back in fear. We need to face these challenges square on,” he
said
The ability to understand susceptible genes, to modify them, and
to circumvent the limitations of these genes will lead to future
medical breakthroughs and may increase the average life expectancy
by 20 to 30 years, according to Leroy Hood, president and director
of the Institute for Systems Biology in Seattle, Washington and a
keynote speaker at the event.
Hood addressed the skeptical argument by saying, “We
underestimate what can we do in the long-term (five to 10
years).”
However, the development of the industry will also lead to
issues of privacy of an individual’s genetic information.
Employers and health care insurance companies could be
particularly interested in a person’s genetic makeup before
hiring or selling them an insurance plan ““ an issue discussed
at the symposium.
Experts also believe that the recent trend toward admitting DNA
tests as evidence in criminal court cases will expand to other
arenas of identification.
From a single drop of blood or a few cheek cells, the genetic
identity of humans could be easily recorded.
Every human has a vast amount of DNA, much of which has no known
function. Only a small region of genetic material, called
“coding regions” perform known functions. The remaining
stretches of DNA have variations which can distinguish every human
being from each other.
In the future, this information could be obtained when
individuals are arrested for a crime, or even when they apply for a
driver’s license, citizenship or a government job, according
to Mark A. Rothstein, chair of Law and Medicine and director of the
Institute for Bioethics, Health Policy and Law at the University of
Louisville.
The information could then be stored in a DNA databank for
access to any person’s genetic information at any time.
Risks of disclosure to insecure third parties and privacy laws
for how this data is used will be debated in Congress in future
years, and experts believe there is no clear-cut answer.
“We must balance the risks and benefits,” said
Rothstein, who proposed that only non-coding regions should be used
for identification, and that samples should be destroyed after
analysis.
Furthermore, the risks and benefits of deciding children’s
genes before they’re even born extends out to moral and
ethical issues, which are more difficult to answer.
But Rothstein is quick to point out that genetics isn’t
immutable. For instance, a shy gene in a child may be overcome with
proper training while still young. But more serious genetic
defects, which are not as easily overcome or are sometimes
terminal, in the case of Huntington’s disease, raises more
questions about how much knowledge is too much, and what to do with
it.
While the experts concurred that there could be widespread
disagreement among the public for even the smallest genetic
advancement, they unanimously agreed that the genetic revolution
must go on.
“People who say “˜turn the research off’ are
wrong, and we simply can’t,” said Nancy Wexler, the
Higgins professor of neuropsychology at Columbia University. Wexler
has also studied the world’s largest family with
Huntington’s disease.
“Right now, we can predict; we can’t prevent. We
have to push through to the other end.”
