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[...]... lead to the following three conclusions: (1) the public is generally interested in and concerned about genetics and pharmacogenomics; (2) many members of the public are confused about the nature and consequences of pharmacogenomics; and (3) responses to questions on these issues frequently varied on the basis of education, income, race and ethnicity, and age but infrequently on the basis of other demographic... other three categories of research, anonymous testing had the highest percentage for individuals below age 50, but anonymity became less important for respondents over age 50 For those age 60 and over, anonymity was the least important concern Sharing of the information nationwide with other scientists, of concern to those under 50, was the second most likely condition for testing for those 50 and over... legislation In short, genetics legislation becomes another middle-class entitlement (Suter, 2001) Is she right? Although our survey was conducted before publication of Professor Suter’s article, our research sheds light on her assertion We attempted to determine the level and likely consequences of public concern about the disclosure of genetic information by asking the following questions (Questions... 0.878) Only about 60% of respondents with less than a high school education said they would participate in research if the results were anonymous or if the results were shared with other scientists In contrast, 84.9% of those with a graduate or professional degree reported that they would participate if the possibility existed to develop a treatment in the future based on their participation The response... National Institute of General Medical Sciences (lead institute), the National Human Genome Research Institute, and the National Institute for Environmental Health Sciences of the National Institutes of Health I want to thank, in particular, Dr Rochelle Long, of the NIGMS, for her commitment to the exploration of these issues as well as her support and substantive contributions The grant application... Adding education to race/ethnicity produces additional valuable information As indicated in Figure 1.3, for universities and medical schools, trust levels increased with education for all race/ethnicity groups Figure 1.4 indicates that for health organizations, the other research entities in which there was the most trust, education did not correlate with increased trust Trust generally increased with education. .. the two weights The survey contained 12 substantive questions, most with subparts, that asked about genetic testing, genetic research, access to genetic information, and prescription medications The survey used the following 18 demographic variables: health status, prescription and nonprescription medicine usage, health of family members, size of household, age, education, regular use of computer,... genetic test The responses were quite similar for employers, health insurers, and life insurers This public view of equal concern for disclosure to employers, health insurers, and life insurers contrasts with the pattern of legislation enacted to protect the confidentiality of genetic information Although there is a difference between privacy legislation and nondiscrimination legislation, they are related... younger respondents were more concerned about confidentiality, perhaps because they had the most to lose from disclosure in terms of insurance or employment discrimination Another possible explanation is that older individuals, who were more likely to be retired or on Social Security, wanted to maximize the scientific value of their research participation and were not as fearful of the economic consequences... popular press has begun to feature articles on the development of genome-specific medications A notable exception to the increasing focus on pharmacogenetics and pharmacogenomics is the literature dealing with the ethical, legal, and social implications of genetic and genomic research Commentators on “ELSI” issues have only occasionally turned their attention to the range of emerging issues raised by . some proportion (the responders) will achieve benefit, while another fraction will have no response (the non-responders), and a small proportion may suffer a significant side effect (the adverse responders) members of the public are confused about the nature and consequences of pharmacogenomics; and (3) responses to questions on these issues frequently varied on the basis of education, income, race and. PHARMACOGENOMICS:CONSIDERATIONS FOR COMMUNITIES OF COLOR, 267 Laurie Nsiah-Jefferson, M.P.H. W.K. Kellogg Fellow, Brandeis University VI CONTENTS 15 CONSTITUTIONAL ISSUES IN THE USE OF PHARMACOGENOMIC VARIATIONS