URI researchers to investigate ethical principles found
in legislation governing genetic information
KINGSTON, R.I. -- July 5, 2000 -- Do you have a defective gene? Will
your genetic code predict you will become ill or die from a genetic disease
such as Huntington's, Alzheimer's, or Sickle Cell Anemia? If your employer
knew this information, could you lose your job or fail to get hired?
The Human Genome Project's successful unlocking of genetic code secrets
brings these Orwellian concerns into present day reality with health care
costs soaring and employers' concern about the bottom line.
Twenty states, including Rhode Island, already have laws that limit employers'
access to or use of genetic information about their employees. At least
six other states as well as the U.S. Congress considered such bills in 1999.
Two University of Rhode Island professors from the College of Arts and
Sciences, Dr. Lynn Pasquerella, a professor of philosophy, and Dr. Lawrence
Rothstein, a professor of political science, have been awarded a $292,843
two-year grant from the Department of Energy to investigate the ethical
concepts that inform such legislation. The researchers will train judges,
legislators and others to be sensitive to ethical principles such as privacy,
human dignity and equality of opportunity when dealing with laws and policies
regarding genetic information.
The URI researchers will compare 10 states and the federal government
and their action or lack of action in this area. Six of the states have
such laws (Florida, New Hampshire, New York, North Carolina, Rhode Island
and Vermont). Two states (Maryland and Connecticut) and the U.S. Congress
have considered and rejected such laws, and two states haven't considered
them (South Carolina and Massachusetts.) The professors will analyze the
debate over the passage and content of the legislation to answer the following
Were ethical concepts prominent in the debate? If so, which ones? Did
the ethical concepts affect the resulting legislation? How did the concepts
affect the language of the legislation? For example, does the legislation
prohibit outright genetic testing or its use by employers, or does it prohibit
employment discrimination on the basis of genetic information?
The stress of one ethical concept over another may influence the kind
of policy adopted or judgement made. Concepts that may influence the debate
Privacy: Employers' access to genetic information is seen as an intrusion
into an intimate part of an employee's life.
Human dignity: The use of gene information views the employees as a
mere factor of production with fixed and limited capacities and vulnerabilities
and preordained destiny.
Equality of opportunity: Employment decisions based on genetic information
are a form of discrimination based on traits over which the employee has
Autonomy: Employment decisions based on an employee's genetic information,
especially hyper-susceptibility to a particular condition of work, eliminates
the employee's ability to make choices.
Efficiency: The regulation of the use of genetic information may be
viewed as an obstruction to the efficient operation of the free market.
First the researchers will collect the laws, legislative proposals, hearing
records, legislative reports and findings, and advocacy documents from interest
groups, supporters and opponents of legislation. They will interview key
policymakers who supported or opposed the legislation to elaborate on their
position and to note the ethical values they thought important.
Next, the professors will analyze and code the documents and interview
records for ethical concepts brought into play to justify the laws and proposals.
When completed, the researchers will test hypotheses about the possible
correlation between the type of ethical concepts and the type of policy
In addition to publishing their research in journals and presenting their
findings at scholarly meetings, the researchers will offer two workshops,
one at URI for participants from New England and the Mid-Atlantic States,
the other at a location in the Southeast. Each workshop will include 30
to 35 people chosen from among legislators, private sector managers, employee
representatives, lawyers, judges, health care professionals, administration
officials and advocacy group leaders who have an interest in, and a need
to deal with, the use of genetic testing or genetic information in the workplace.
The URI researchers bring years of research and training on the issues
to the project. Pasquerella, who joined URI in 1985, teaches and writes
on medical ethics, including genetic issues, and the philosophy of law.
Her work on liability-driven employment decisions deals with the same questions
raised by the use of genetic information in employment. Furthermore, she
has served on hospital ethics committees and conducted training with regard
to medical ethics.
Rothstein, who holds both a law degree and a Ph.D., has dealt extensively
with issues of discrimination, workers' rights and the political process,
and privacy in his teaching, law practice and writing. His recent research
has focused on electronic monitoring and surveillance in the workplace.
He is also involved in presenting continuing education workshops on ethical
issues for lawyers in public service. He came to URI in 1974.
Both researchers are fellows of URI's John Hazen White Jr. Center for
Ethics and Public Service. The main activity of the center is to conduct
ethical training workshops on public policy issues with high-level public
The Department of Energy's Office of Biological and Environmental Research
is funding this study as part of its interest in analyzing the human genome
and the consequences of genetic mutations, especially those caused by radiation
and the chemical by-products of energy production. The U.S. Human Genome
Project began in 1990 as a formal partnership between DOE and the National
Institutes of Health.
# # #
For Information: Jan Sawyer, 401-874-2116,
Todd McLeish, 401-874-2116