title: A nation's genes for a cure to cancer: evolving ethical, social and legal issues regarding population genetic databases.
abstract: The advent of the human genome sequence has focused research on understanding underlying genetic links to complex diseases such as cancer, asthma and heart disease. In the past few years, individual countries, such as Iceland, Estonia, Singapore and the United Kingdom, have created national databases of their citizens' DNA for comparative research. Most recently, an international consortium including Nigeria, Japan, China and the United States launched a $100 million project called the International HapMap to map the human genome according to haplotypes, blocks of DNA that contain genetic variation. Such population genetic databases present challenging ethical, social and legal issues, yet regulation of genetic information has developed sporadically, from region to region, without a consistent international standard. Without a clear understanding of the consequences of genetic research in terms of individual and community-wide discrimination and stigmatization, genetic databases raise concerns about the protection of genetic information. This Note provides a survey of the evolving landscape of population genetic databases as a legislative and public policy tool for national and international regulators. It compares different approaches to regulating the collection and use of population genetic databases in order to understand what areas of consensus are formulating a foundation for an international standard. As the first population genetics project that will span multiple countries for the collection of DNA, the International HapMap has the potential to become an influential standard for the protection of population genetic information. This Note highlights issues among the national databases and the HapMap project that raise ethical, social and legal concerns for the future and recommends further protections for both individual donors and community interests.
authors.affiliation: Columbia Journal of Law and Social Problems, Columbia University, USA.
authors.forename: Alice
authors.initials: A
authors.lastname: Hsieh
mesh_terms: D022126:Access to Information / Q000331:legislation & jurisprudence; D018070:Biological Specimen Banks / Q000331:legislation & jurisprudence; D003219:Confidentiality / Q000331:legislation & jurisprudence; D030541:Databases, Genetic / Q000941:ethics* / Q000331:legislation & jurisprudence*; D030881:Disclosure / Q000331:legislation & jurisprudence; D004957:Estonia; D028744:Ethics Committees, Research; D005190:Family; D005828:Genetics, Population; D006239:Haplotypes / Q000235:genetics*; D016045:Human Genome Project; D006801:Humans; D007055:Iceland; D007258:Informed Consent / Q000331:legislation & jurisprudence; D038622:Internationality; D019724:Presumed Consent / Q000331:legislation & jurisprudence; D045808:Refusal to Participate / Q000331:legislation & jurisprudence; D012846:Singapore; D006113:United Kingdom