Is it ethical to deny genetic research participants individualised results?

被引:26
作者
Affleck, P. [1 ]
机构
[1] St James Univ Hosp, Epidemiol & Biostat Sect, Leeds Inst Mol Med, Leeds LS9 7TF, W Yorkshire, England
关键词
ISSUES;
D O I
10.1136/jme.2007.024034
中图分类号
B82 [伦理学(道德学)];
学科分类号
摘要
This article examines a key ethical concern that has arisen in the work of the international research consortium GenoMEL (http://www.genomel.org) and that has relevance to all genetic research in humans. The question is whether it is ethical to deny research participants the opportunity to receive individualised genetic results obtained from the biological samples they provide. Where those results are of clinical importance, a "respect for persons'' requirement would make the offering of those results imperative. However, where those results are of uncertain clinical value, the picture is less clear. This paper argues that researchers may not be ethically obliged to offer such results to their participants, because of competing ethical demands.
引用
收藏
页码:209 / 213
页数:5
相关论文
共 14 条
[1]  
[Anonymous], 2002, INT ETH GUID BIOM RE
[2]   Human tissue research in the genomic era of medicine -: Balancing individual and societal interests [J].
Ashburn, TT ;
Wilson, SK ;
Eisenstein, BI .
ARCHIVES OF INTERNAL MEDICINE, 2000, 160 (22) :3377-3384
[3]   Ethical issues in human genome epidemiology: A case study based on the Japanese American family study in Seattle, Washington [J].
Austin, MA .
AMERICAN JOURNAL OF EPIDEMIOLOGY, 2002, 155 (07) :585-592
[4]  
Beauchamp T.L., 2001, PRINCIPLES BIOMEDICA, V5th, P57
[5]   Informed consent for population-based research involving genetics [J].
Beskow, LM ;
Burke, W ;
Merz, JF ;
Barr, PA ;
Terry, S ;
Penchaszadeh, VB ;
Gostin, LO ;
Gwinn, M ;
Khoury, MJ .
JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, 2001, 286 (18) :2315-2321
[6]   INFORMED CONSENT - WHY ARE ITS GOALS IMPERFECTLY REALIZED [J].
CASSILETH, BR ;
ZUPKIS, RV ;
SUTTONSMITH, K ;
MARCH, V .
NEW ENGLAND JOURNAL OF MEDICINE, 1980, 302 (16) :896-900
[7]  
*DEP HLTH, 2005, RES GOV FRAM HLTH SO, P17
[8]  
Department of Health, 2005, CREAT PAT LED NHS DE, P3
[9]  
Fernandez Conrad V, 2003, IRB, V25, P12, DOI 10.2307/3564300
[10]  
*GENOMEL, PHYS INF FAM MEL