TY - JOUR

T1 - DNA-Banken, informierte Einwilligung und Treuhandschaft

AU - Schröder, Doris

AU - Williams, Garrath

PY - 2002/6

Y1 - 2002/6

N2 - The frequency and scope of human genetic banking has increased significantly in recent years and is set to expand still further. Two of the major growth areas in medical research, pharmacogenomics and population genetics, rely on large DNA banks to provide extensive, centralised and standardised genetic information as well as clinical and personal data. This development raises ethical concerns.Our article focuses on the appropriateness of informed consent as a means to safeguard both research subjects’ rights and their good will. It will be argued that information requirements are extensive, with regard to non-therapeutic research, feedback, type of consent and possible breaches of confidentiality as well as possible implications for third parties. Given the demand of these requirements and the danger that research facilitated by these huge DNA banks may not reflect public priorities, it is argued that the research needs be steered by trustees to ensure that the altruistic act of sample donation contributes to the public good.

AB - The frequency and scope of human genetic banking has increased significantly in recent years and is set to expand still further. Two of the major growth areas in medical research, pharmacogenomics and population genetics, rely on large DNA banks to provide extensive, centralised and standardised genetic information as well as clinical and personal data. This development raises ethical concerns.Our article focuses on the appropriateness of informed consent as a means to safeguard both research subjects’ rights and their good will. It will be argued that information requirements are extensive, with regard to non-therapeutic research, feedback, type of consent and possible breaches of confidentiality as well as possible implications for third parties. Given the demand of these requirements and the danger that research facilitated by these huge DNA banks may not reflect public priorities, it is argued that the research needs be steered by trustees to ensure that the altruistic act of sample donation contributes to the public good.

KW - Genetics

KW - Genomics

KW - Informed consent

KW - Medical ethics

KW - DNA banks

U2 - 10.1007/s00481-002-0166-5

DO - 10.1007/s00481-002-0166-5

M3 - Journal article

VL - 14

SP - 84

EP - 95

JO - Ethik in der Medizin

JF - Ethik in der Medizin

SN - 1437-1618

IS - 2

ER -