Informed Consent in Genomics and Genetic Research

被引：121

作者：

McGuire, Amy L. ^{[1
]}

Beskow, Laura M. ^{[2
]}

机构：

[1] Baylor Coll Med, Ctr Med Eth & Hlth Policy, Houston, TX 77030 USA

[2] Duke Univ, Ctr Genome Eth Law & Policy, Duke Inst Genome Sci & Policy, Durham, NC 27708 USA

来源：

ANNUAL REVIEW OF GENOMICS AND HUMAN GENETICS, VOL 11 | 2010年 / 11卷

关键词：

informed consent; genetics research; ethics; biobanking; INFORMATION NONDISCRIMINATION ACT; BIOLOGICAL SAMPLES; CLINICAL-TRIALS; DNA DATA; PARTICIPANTS; POPULATION; DISCLOSURE; BIOPSIES; BIOBANKS; ETHICS;

D O I：

10.1146/annurev-genom-082509-141711

中图分类号：

Q3 [遗传学];

学科分类号：

071007 ; 090102 ;

摘要：

There are several features of genetic and genomic research that challenge established norms of informed consent. In this paper, we discuss these challenges, explore specific elements of informed consent for genetic and genomic research conducted in the United States, and consider alternative consent models that have been proposed. All of these models attempt to balance the obligation. to respect and protect research participants with the larger social interest in advancing beneficial research as quickly as possible.

引用

页码：361 / 381

页数：21

共 50 条

[1] Informed consent for genetic research
Hamvas, A
Madden, KK
Nogee, LM
Trusgnich, MA
Wegner, DJ
Heins, HB
Cole, FS
ARCHIVES OF PEDIATRICS & ADOLESCENT MEDICINE, 2004, 158 (06): : 551 - 555
[2] Informed consent for genetic research
Kelsey, KT
JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, 1996, 275 (14): : 1085 - 1085
[3] Informed consent in genetic research
Williams, ED
CROATIAN MEDICAL JOURNAL, 2001, 42 (04) : 451 - 457
[4] Reforming informed consent to genetic research
Annas, GJ
JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, 2001, 286 (18): : 2326 - 2328
[5] CDC guidelines address informed consent for genomics research
Traynor, K
AMERICAN JOURNAL OF HEALTH-SYSTEM PHARMACY, 2002, 59 (01) : 17 - 17
[6] Informed consent for genetic research - Reply
Clayton, EW
JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, 1996, 275 (14): : 1086 - 1086
[7] Informed consent in biobanking and genetic research
Casado da Rocha, Antonio
Etxeberria Agiriano, Arantza
ARBOR-CIENCIA PENSAMIENTO Y CULTURA, 2008, 184 (730) : 249 - 260
[8] Genetic research, adolescents, and informed consent
Weir, RF
Horton, JR
THEORETICAL MEDICINE, 1995, 16 (04): : 347 - 373
[9] Informed Consent in the Genomics Era
Mascalzoni, Deborah
Hicks, Andrew
Pramstaller, Peter
Wist, Matthias
PLOS MEDICINE, 2008, 5 (09): : 1302 - 1305
[10] Informed Consent in the Genomics Era
Rego, Shannon
Grove, Megan E.
Cho, Mildred K.
Ormond, Kelly E.
COLD SPRING HARBOR PERSPECTIVES IN MEDICINE, 2020, 10 (08): : 1 - 13

← 1 2 3 4 5 →