Human Genome News, November 1991; 3(4)
Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
A diverse panel of experts led spirited discussions in an open workshop on "Protecting the Privacy of Genetic Information," held September 11-12 in Bethesda, Maryland. The meeting was hosted by the NIH-DOE Joint Working Group on Ethical, Legal, and Social Issues (ELSI) related to data generated by the Human Genome Project.
Anita Allen (Georgetown University Law Center) defined genetic privacy as (1) the inaccessibility of personal information and (2) the right of individuals to make decisions about themselves. Allen stated that privacy is valued in modern society as an element of personhood and may also protect people from embarrassment or stigmatization. However, some believe that warning family members about impending disease may sometimes justify overriding individual privacy interests.
Harold Edgar (Columbia University Law School) noted that groups are not recognized as having privacy rights under the law; in some circumstances, however, an aggregate of people can be regarded legally as an individual and an implicit privacy right conceded. These contradictions have led to mixed case law; for example, the Amish in Pennsylvania gained the right to teach their children according to their cultural beliefs, while the U.S. Supreme Court held in another case that a group could not be defamed as an individual can be. According to Edgar, biological "leavings" such as hair and urine are probably not subject to current privacy protections under the doctrine of "abandonment"; anything thrown out or deliberately discarded is no longer protected.
Paul Mendelsohn (Neurofibromatosis Inc.) gave a forceful description of real-life concerns of afflicted individuals, particularly in the areas of employment and insurance. Mendelsohn asserted that antidiscrimination laws do not work; furthermore, filing a discrimination suit is a sure way to announce one's disability to the world. Affected people also have difficulty in dealing with familial and societal responses to a genetic disability, especially a clearly visible one; these responses often include guilt, denial, and ostracism.
Phillip Reilly (Eunice Kennedy Shriver Center for the Mentally Retarded) discussed storage of biological materials in DNA banks and genetic information in databanks. The largest collections of medical samples are in academia (well over 50,000 specimens, with the number growing slowly) and in state forensic laboratories (over 50,000 samples, growing rapidly). State health departments, which collect and store blood spots from all newborn babies, have accumulated the largest numbers of samples, and 11 states are following Virginia's lead in establishing state DNA banks for convicted felons. The military, also studying the use of stored DNA for identification purposes, could begin the accumulation of millions of samples.
Lance Hoffman (George Washington University) discussed computer databanks, which are often designed for utility rather than security. In a world of networked computers, however, common sense must play a role; too simple computer passwords are easily bypassed. Solutions range from good locks to very sophisticated computer security systems.
Jan-Lori Goldman (American Civil Liberties Union) emphasized the need for individuals' control over their own identifying information and personal data. She differentiated between the banking of identifiable data and the public health interest in accumulating statistical information. The Supreme Court has held that a reasonable expectation of privacy associated with certain activities or personal conduct can be protected by the Fourth Amendment. In Goldman's view, this reasonable expectation is decreasing.
Bartha Knoppers (University of Montreal) cited three widespread myths: (1) genes determine what people are; (2) people are defined by their genetic diseases; and (3) genetic disease is abnormal. She also gave an overview of genetic privacy perspectives among different countries, many of which have recommended or passed legislation prohibiting access to such information by insurers and employers; in the Netherlands, insurance companies have a self-imposed ban on genetic testing. Knoppers described a French study in which physicians have been prevented from aggressively treating individuals at risk for glaucoma who were identified through a genetic-marker study of another illness [Science (April 19, 1991)].
Lori Andrews (American Bar Foundation) described the legal patchwork of state regulations governing confidentiality of medical records, including genetic records. Existing laws often apply to physicians only, rather than to the entire field of health professionals, researchers, and other interested third parties. Andrews stressed the importance of developing a model for consistent state legislation to protect genetic information, because medical care historically has been managed at the state level.
John Fanning (U.S. Department of Health and Human Services) discussed the limitations of federal laws governing privacy. These laws often cover only those receiving federal research dollars, and regulations are difficult to enforce for secondary and tertiary recipients of information.
A concern that arose several times was the question of consent when data are collected for one purpose but unexpectedly become valuable for another. Consent agreements may not be clearly understood, participants noted, or they may not be written specifically enough. The availability and cost savings of using an already assembled sample set may prove very attractive, and the voluntary nature of true consent may be subtly compromised.
Diane Hinton (Human Genome Organization and Howard Hughes Medical Institute) described the evolution of strict confidentiality rules for handling identifiable genetic data contributed by members of the Mormon Church in Utah. Hinton recommended that the ELSI working group produce an educational document explaining minimum standards for confidentiality practices.
The full ELSI working group considered a plan of action and chartered a task force on privacy issues; the task force will commission papers for continued discussions, recommend research guidelines, and analyze state and federal legislative agendas on privacy regulations. In addition, the group reaffirmed its commitment to educating professionals and the public on privacy and other concerns pertinent to the Human Genome Project.
Reported by Daniel W. Drell, DOE
and Elinor Langfelder, NIH NCHGR
The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v3n4).
The Human Genome Project (HGP) was an international 13-year effort, 1990 to 2003. Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome. See Timeline for more HGP history.
Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.