Genome Technology & Reproduction:
Values & Public Policy

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Project Policy Report
Executive Summary

This document presents the recommended policy approaches for genetics and reproductive issues by the Genome Technology & Reproduction: Value & Public Policy project funded by NIH/NHGRI/ELSI. The crafting of such recommendations was based on the project team’s analysis of a number of different items: relevant case law, existing and pending genetics legislation, professional standards, and, of critical importance, the community dialogues. One of the specific aims of the project was to develop policy recommendations responsive to and influenced by rational democratic deliberation. We (the project team) conducted a series of community dialogues in seven different Michigan cities to determine community views regarding genetics and reproductive issues and to observe how these views were influenced by rational democratic deliberation. These community dialogues largely influenced our policy recommendations. In some instances, the community responses were ambiguous or did not address all policy issues. Moreover, the project team also believes that policy makers should consider existing and proposed policy. As a result, the recommended policy approaches are heavily influenced by the community dialogues and also consider relevant case law, legislation, regulations, and professional standards.

This report begins by describing the nature of this report and how it fits within the larger project. The following sections discuss the four areas that influenced the project team’s development of policy approaches. The first section analyzes case law related to genetics and reproductive issues. Very little case law actually deals specifically with genetics. As a result, the section focuses on analogous areas of law and our speculations as to how courts might address various genetics and reproductive issues.

The second section discusses the spate of existing and pending genetics legislation. We highlight the primary areas such legislation addresses and the legislative trends in this legislation. This section also analyzes the possible (sometimes unintended) implications of such legislation.

The third section describes professional standards in the area of genetics. Our discussion focuses largely on accreditation standards, the Code of Ethics in genetic counseling, and policy positions that professional organizations have taken with respect to some genetics issues.

The fourth section summarizes the community responses regarding appropriate policies and policy making approaches. The section describes the community responses regarding: 1) areas in which legislation is or is not appropriate; 2) appropriateness of government involvement in areas related to reproductive genetics; 3) propriety of financial incentives regarding and government funding of reproductive technologies, genetic testing, genetic counseling, and research; 4) professional standards and the role of professionals in setting policy; and 5) education. One of the striking aspects of the community responses was that, for the most part, they preferred to leave genetics policies in the hands of genetics professionals as opposed to legislatures. The primary area in which they supported legislative action was to protect reproductive liberty and to prevent discrimination by insurers or employers.

Finally, we describe the project team’s recommended policy approaches. We offer policy approaches and guidelines in light of our analysis of the community responses, case law, existing and pending legislation, regulations, and professional standards. Our recommendations were largely influenced by the communities’ desire to avoid legislation as much as possible and by our belief that premature legislation in this fast moving field may create more problems than it solves. In addition, this section points out the ways in which it may not be appropriate to distinguish genetics information from other medical information. In offering our recommendations, we recognize that this is a preliminary project based on community dialogues involving only a limited number of community members in seven cities in one state (Michigan). As a result, our recommendations can only be considered an illustration of how policy makers can use the community dialogue approach to develop sound public-based policy.

Below we summarize the project team’s primary recommendations:

1. Legislatures should proceed slowly, cautiously, thoughtfully, and with a good understanding of genetics and reproductive sciences.
   
   
2. Policy makers should protect the voluntariness of genetics testing of adults. Professional standards should set the conditions for testing of post-newborn children.
   
   
3. Much of the development of genetic policy should be left to genetics professionals, with encouragement of legislative action where professionals alone may not be able to achieve certain goals.
   
   
4. Policy makers should devise mechanisms to make genetic counseling available with genetics testing.
   
   
5. Unauthorized disclosure of genetics, as well as other medical, information to third parties should be prohibited, except in the very rare instances in which disclosure is the only way to protect an unknowing individual from immediate avoidable harms; professionals, however, should not be required to make such disclosures.
   
   
6. Individuals, both adult and children, should be able to avoid learning genetic information about themselves against their wishes.
   
   
7. Newborn screening should be limited to conditions for which testing can provide therapeutic benefits. Testing for specific diseases should be recommended to state Departments of Health by advisory boards of genetic professionals.
   
   
8. Legislators should be cognizant of the ways in which creating new legal rights to try to protect privacy and autonomy interests may have negative impacts on research and clinical care.
   
   
9. Legislators should generally prohibit employers from requesting genetic information from employees, except when such information legitimately is essential to protect public safety.
   
   
10. Employers should not be able to discriminate on the basis of genetic or other medical information.
    
    
11. Insurers should not be able to discriminate on the basis of genetic information. We also encourage legislators to consider the arguments in favor of prohibiting discrimination on the basis of other medical information, which of course challenges the underwriting system.
    
    
12. Policy makers should enhance public and medical education about genetics and reproductive issues.

     

     

     

    
    

    
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     Last updated 08/07/00
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