How do Americans view participation in research having to do with the
genetics of mental and physical illnesses?
Quite favorably, a pilot study suggests. It was headed by Laura Roberts,
M.D., chair of psychiatry at the Medical College of Wisconsin and a bioethics
professor for the college's Health Policy Institute. Results appeared in the
January-February Comprehensive Psychiatry.
Roberts and her colleagues developed a written survey to explore people's
attitudes toward participation in research pertaining to the genetics of
mental and physical illnesses. The survey did not ask respondents whether they
would be willing to participate in such research.
The investigators then pilot-tested the survey on 63 subjects. These were
healthy adults working in two settings—an academic medical center (the
University of New Mexico Health Sciences Center) and a large laboratory
dedicated to scientific and defense development (the U.S. Department of
Energy's Sandia National Laboratories). Respondents ranged in age from 21 to
65 years and included a similar number of men and women. Most were Caucasian,
and about a third were of Hispanic background. They worked in technical,
professional, or administrative positions.
Results from the pilot test revealed that respondents viewed participation
in research concerning the genetics of mental and physical illnesses as
acceptable for all 12 subpopulations inquired about: healthy people, people
with serious mental illnesses, people with serious physical illnesses, members
of ethnic minorities, elderly people, health care employees, people in the
military, government employees, pregnant women, prisoners, people living in
nursing homes or other health care facilities, and children.
Further, respondents rated such research as most acceptable for individuals
with serious physical or mental illnesses and least acceptable for vulnerable
groups such as prisoners, individuals in health-care facilities, and
Respondents indicated that they saw more "positives" than"
negatives" in genetic research participation. They agreed that
such participation would more likely entail psychological risks than physical
Most respondents said that people should consider participating in genetic
research if it could benefit family members, coworkers, or society, but
contended that people with an elevated risk of genetic illness should be
especially willing to participate.
"This high level of support for genetic inquiry by working persons
was unexpected," Roberts and her team concluded in their report."
Another striking result was the pattern of perspectives offered by men
and women. Male workers rated the genetic research importance, involvement,
positives/benefits, and motivations more highly than did female workers. This
is very interesting because women in other studies have been shown to be more
supportive than men of clinical research participation."
Roberts told Psychiatric News that the study results"
highlight the importance of genetics and genetically based health
issues for working people. They also demonstrate the rather remarkable level
of openness and excitement about participation in genetic research—and
perhaps human clinical research or scientific work more generally."
The project was funded by the U.S. Department of Energy, the National
Institute on Drug Abuse, and the National Institute of Mental Health.
The study, "Employees' Perspectives on Ethically Important
Aspects of Genetic Research Participation: A Pilot Study," can be
accessed online at<www.sciencedirect.com>
by clicking on "Browse A-Z of journals," then "C,"
then Comprehensive Psychiatry. ▪