Ethical Guidelines for Medical Research on Workers

Abstract

Federal regulations protecting research subjects make special provisions for individuals who are subject to coercion or undue influence. Because they are subject to coercion and undue influence, workers should be considered vulnerable subjects of research. A series of ethical guidelines are proposed for medical research on workers that seek to safeguard the rights of workers and maintain the scientific integrity of research. In general, the guidelines emphasize that participation must be voluntary and knowing, that the confidentiality of medical information must be protected, and that the benefits of the research to the participants must be maximized while the risks are minimized.

Genetics in the workplace: implications for occupational safety and health.

“…However, the use of genetic information in occupational safety and health research and practice presents both promise and concerns [McCanlies et al 2003;Kelada et al 2003;Henry et al 2002;Christiani et al 2001;Schulte et al 1999]. Use of genetic information raises medical, ethical, legal and social issues [Clayton 2003;Ward et al, 2002;McCunney 2002;Christiani et al 2001;Rothstein 2000a;Schulte et al 1999;Lemmens 1997;Barrett et al 1997, Van Damme et al 1995Gochfeld 1998;Omenn 1982].…”

“…Today it is possible to produce a complete record of an individual's genetic makeup. Understanding the genetic components of disease and the interaction between genetic and environmental factors has increased, and the application of this knowledge to the workplace raises medical, ethical, legal, and social issues [Clayton 2003;Ward et al 2002;McCunney 2002;Christiani et al 2001;Rothstein 2000a;Schulte et al 1999;Lemmens 1997;Barrett et al 1997;Van Damme et al 1995;Gochfeld 1998;Omenn 1982]. The scientific impact of genetic information can be great, but that impact can be intertwined with other contentious workplace issues.…”

Participatory Action Research: A Protective Research Design

“…Employed people are considered a vulnerable population, especially in employer-sponsored research or research taking place at the worksite. Rothstein and others argue that workers should be given the additional protection or the higher level of consideration often reserved for children, the mentally ill, and pregnant women [5,6]. This is because most workers cannot afford to jeopardize their jobs and income by appearing uncooperative with employer-sponsored research.…”

“…No inducements should be offered to participate in the research. It is essential that "irresistible" incentives such as money or vacation time not be used to recruit study subjects [5]. On the other hand, in our experience, workers participating in research should not incur undue expense, so IRBs generally accept expense reimbursement and low value tokens of appreciation.…”