Ethics in population-based genetic research

Matthew DeCamp, Jeremy Sugarman

Research output: Contribution to journalReview articlepeer-review

Abstract

Population-based genetic research, including genetic epidemiology, shows tremendous potential to elucidate the role of genes as causal factors in complex and common human diseases. Like all research with human subjects, full realization of these benefits requires careful attention to its ethical conduct, establishing an appropriate balance between individual protections and the advancement of scientific and medical knowledge. This article reviews the growing literature on genetics research and ethics to describe some of the fundamental ethical issues in population-based genetics research, including research design, recruitment and informed consent, and dealing with research results. Its focus is on areas where consensus is forming and where future work is needed.

Original languageEnglish (US)
Pages (from-to)1-26
Number of pages26
JournalAccountability in Research
Volume11
Issue number1
DOIs
StatePublished - 2004

Keywords

  • Ethics
  • Genetics research
  • Informed consent
  • Population genetics
  • Research standards
  • Research subjects

ASJC Scopus subject areas

  • Education
  • Library and Information Sciences

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