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Human Genome News, May 1994; 6(1)

ELSI Group Lists Health-Care Reform Basics

As the Human Genome Project uncovers more disease genes, "it is likely in the next few years that every one of us will have a preexisting condition and be uninsurable," said Hillary Rodham Clinton in a speech last September to the audience at the Lasker Awards. The First Lady has cited the Human Genome Project several times recently as one more reason for health-care reform.

In mid-February, the DOE-NIH Joint Working Group on the Ethical, Legal, and Social Implications (ELSI) of Human Genome Research, chaired by Nancy Wexler (Columbia University), met in Washington, D.C., to discuss the implications of health-care reform for people with or at risk for genetic disease. In a report on genetic information and health insurance released last May [HGN 5(2), 1-2 (July 1993)], the working group concluded that ensuring fair and affordable health insurance would require modification of the current health-care system. The report called for universal access to a broad array of services and contained several recommendations to the President's Task Force on Health Reform about how to achieve that goal.

At the February workshop, experts on health policy, law, ethics, and genetic diseases gathered to evaluate how each of the half-dozen major proposals for health-care reform would affect people with or at risk for genetic disease. The bills vary greatly in detail and are likely to change substantially as they wend their way through congressional committees. Even so, workshop participants identified several features to be included in any health-care-reform package:

  • universal access to a comprehensive set of benefits, including genetic services;
  • protection against arbitrary denial of affordable health insurance due to genetic conditions; and
  • safeguards to protect the confidentiality of genetic health information about individuals and families.

Universal Coverage

Participants agreed that any reform bill must provide universal access to health care. If not, inequities in the existing health-care system-in which some 39 million Americans may be uninsured-will only be exacerbated. "Discrimination is common today in our employment-based system for health-care coverage," noted Kay Johnson (March of Dimes). "Health status discrimination among individuals has long been legally, ethically, and socially acceptable. Only some specific forms of discrimination based on race, color, religion, gender, national origin, and disability are illegal." Without reform, she warned, genetic knowledge can become a new tool for excluding people from the health-care system.

All major bills either prohibit or restrict exclusions based on preexisting conditions, but such protections alone are not enough to ensure universal access to affordable health insurance, attendees agreed. In fact, only two bills would actually deliver such access, said Peter Budetti (Director, Center for Health Policy Research, George Washington University); these are the Clinton bill or Health Security Act of 1994 and the "single-payer plan" introduced by Sen. Paul Wellstone (D-Minn.) and Rep. Jim McDermott (D-Wash.).

"Universal" coverage means something different in each bill, explained Robert Griss (Center on Disability and Health). In the "Managed Competition Act" introduced by Rep. Jim Cooper (D-Tenn.), for instance, employers must offer workers the opportunity to buy into a plan but have no obligation to pay for it. According to a recent analysis by the Congressional Budget Office, Griss said, 25 million Americans would remain uninsured.

Access to What?

Even for those bills that do provide universal access, the key question is, Access to what services and treatments? Clearly, with concerns about cost containment high, not all genetic services would be covered in the various basic plans, but the proposed legislation gives only general guidance about what might be included. In the Clinton proposal, for example, consumers would choose from various plans administered by insurance-purchasing pools or alliances. Each plan would offer at least a basic set of benefits. A national health board and Congress would decide what belongs in the basic minimum benefit package. As written, the Clinton package includes "preventive family planning" and "pregnancy-related" and "diagnostic" services-presumably, genetic testing could fall under those categories. Similarly, the Cooper bill states that the basic benefits package shall include a full range of diagnostic services, including "appropriate screening."

A crucial question relevant to all the bills is who decides what is in the basic package, said Budetti. Specifically, he asked, how much should be spelled out in legislation and how much should be left up to a national board? Would the genetics community (which the group understood to be both providers and receivers of genetic services) be served best by specific or generic language in the bills? Concerning the "clinical preventive services" in the Clinton basic plan, Budetti asked, "Do you want them vague or more defined than this? We can't anticipate all preventive services. There is a danger in being too specific in the statute, in being locked into 1994 science."

Access to genetic services will hinge on several other features of any health-care proposal, participants noted. One is whether the various proposals cover experimental therapies, as many genetic services are likely to be classified. Similarly, coverage of long-term and rehabilitative treatment of congenital health problems will be critical to those with genetic disorders. Will people have access to specialists and academic health centers, where much of genetic testing and other advanced services are done today?

Privacy of Genetic Information

Any health-reform measure must establish rigorous procedures to ensure the confidentiality of health and genetic data. "If you look closely at the current situation for the legal protection of privacy," said Lawrence Gostin (Georgetown University Law Center), who chaired the privacy committee of the President's Task Force on Health Care Reform, "you will find it is highly limited and inadequate. State laws are inadequate and variable." What's more, as the Human Genome Project advances, "the health data that could be generated could provide a complete profile of patients. It warrants our serious attention," said Gostin.

At a minimum, Gostin called for preemptive federal legislation to guarantee the privacy of genetic and other health information and to establish a data-protection board. Individuals should have the right to review and correct personal data, and the data should be used only for the purposes authorized. All the major bills recognize the need to ensure the privacy of health data, including genetic data, although only three describe it in detail.

In addition, members discussed the Fair Health Information Practices Act of 1994, introduced in March by Rep. Gary Condit (D-Calif.), that addresses many concerns about genetic privacy. This bill establishes safeguards for information arising from either medical treatment or payment, explained Robert Gellman (general counsel to the House Committee on Government Operations). Under the proposed system, information would be protected wherever it may be, Gellman said, in contrast to the current situation in which information is protected only in a doctor's office. Other participants worried that this legislation does not go far enough. It will not, for example, protect data that emerge from such other sources as DNA fingerprinting and genetic counseling or are generated by health research.

Special Treatment?

Participants grappled repeatedly with the question of whether the genetics community should seek "special treatment" in health-care reform by specifying which genetic technologies would be covered and asking for protection of genetic information. "The [ELSI] health insurance task force labored for a year to make a case that genetic risks are different," noted ethicist Tom Murray (Case Western Reserve University). "We had to abandon it. I think that all health risks ought to be covered equally."

Marsha Saxton (The Project on Women and Disability) stated that individuals with or at risk for genetic disease will simply encounter discrimination before the rest of society does. In this regard, they might be compared with canaries in a mine.

While analyzing any of the proposals in terms of how well they deal with issues raised by genetic advances, one overriding point should be kept in mind, Budetti cautioned. "The heart of the political question is not a choice between a good bill and a perfect bill but a pretty good bill and phony reform. We can say what's missing from this particular bill, but . . . what will happen to the current system without reform?"


Copies of the May 1993 Report of the Task Force on Genetic Information and Insurance are available from

  • ELSI Branch
  • Room 617, Bldg. 38A
  • 9000 Rockville Pike
  • Bethesda, MD 20892
  • 301/402-4997

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Human Genome Program, U.S. Department of Energy, Human Genome News (v6n1).

Human Genome Project 1990–2003

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.

Human Genome News

Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.