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 questions:

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 include:

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 no control.

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 proposed.

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 administrators.

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.

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For Information: Jan Sawyer, 401-874-2116,
Todd McLeish, 401-874-2116