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Advances in Molecular Genetics, Genomics, Proteomics, Metabolomics, and Systems Biology

Ethical Challenges Encountered in Genomic Research

Patricia A. Roche, JD

From the Department of Health Law, Bioethics and Human Rights, Boston University School of Public Health, Boston, Mass.

Correspondence to Patricia A. Roche, JD, Department of Health Law, Bioethics and Human Rights, Boston University School of Public Health, Boston, MA 02118. E-mail pwroche@bu.edu

Key Words: genetics • ethics • research

An extract of the first 250 words of the full text is provided, because this article has no abstract.

	Introduction

 
Scientists tell us that the human genome is essentially the same in all people and that genetic differences make up about one tenth of a percent of our DNA.¹ Nevertheless, those genetic differences can have a profound impact on health problems encountered by individuals, some of which may be successfully alleviated whereas others continue to elude satisfactory treatment. One could make a similar observation about the ethical problems and dilemmas encountered in genomic research, because although studies of human genomic variation may fundamentally be similar, differences in how studies are carried out can give rise to complex or unique ethical issues, including ones that defy easy resolution. In this article, I present an overview of the basic and some of the specific ethical questions presented by genomic research with a focus on challenges to maintaining privacy and confidentiality in genome-wide association (GWA) studies and sequencing studies. This narrowing of the issues should not be taken as an indication that these are the only challenges that arise in such research. Other issues, such as when and how results of genetic analysis should be reported back to individuals, are certainly worthy of attention but beyond the scope of this article. In keeping with this focus, I discuss some of the practices used by researchers for collecting, maintaining, and publishing genomic data and conclude that one radical approach (used by the highly publicized Personal Genome Project [PGP]) should be viewed as a social experiment rather than a model of best practices to be . . . [Full Text of this Article]