ETHICAL ISSUESEthical Issues in International Collaborative Research onthe Human Genome: The HGP and the HGDP

Knoppers, Bartha Maria; Hirtle, Marie; Lormeau, Sébastien

doi:10.1016/s0888-7543(96)90287-6

Cited by 16 publications

(9 citation statements)

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“…Neben der Diskussion im Hinblick auf die deutsche Geschichte werden in Deutschland sowie international im Rahmen des Humangenomprojektes auch die so genannten Ethical, Legal and Social Implications (ELSI), also die ethischen, legalen und sozialen Aspekte der Forschung und ihrer Anwendung angesprochen [20]. Von einigen Seiten wird befürchtet, dass das stetig wachsende Interesse an der molekulargenetischen Basis von Erkrankungen zu einer Vernachlässi-gung nichtbiologischer, beeinflussbarer Ursachen von psychischen Krankheiten -wie beispielsweise Umweltfaktoren -führen [26] Mittels 6-stufiger Antwortskalen, die von "trifft überhaupt nicht zu" bis "trifft voll und ganz zu" abgestuft sind, sowie den zusätzlichen Antwortmöglichkeiten "kann ich nicht beurteilen" und "Antwort verweigert", hatten die Probanden die Möglichkeit, ihre Meinung differenziert auszudrücken.…”

Section: Ethische Implikationen Psychiatrisch-genetischer Forschungunclassified

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Einstellung zu psychiatrisch-genetischer Forschung und pr�diktiver Diagnostik

Illes

Rietz

Fuchs

et al. 2003

Ethik in der Medizin

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Section: Ethische Implikationen Psychiatrisch-genetischer Forschungunclassified

“…Die dabei geäußerten Befürchtungen betreffen u. a. den Datenschutz, das Menschenbild, die Selbstbestimmung, die Pränataldiagnostik und den Umgang mit dem Wissen über unausweichliche bzw. möglicherweise entstehende Erkrankungen [4,10,20].…”

unclassified

Einstellung zu psychiatrisch-genetischer Forschung und pr�diktiver Diagnostik

Illes

Rietz

Fuchs

et al. 2003

Ethik in der Medizin

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“…The HGP began as an international collaborative research effort focusing on developed nations that was advocated primarily by the United States, with support from Europe and Japan [40]. The HGP is not, however, limited to developed nations.…”

Section: Discussionmentioning

confidence: 99%

The Public’s Attitudes towards the Use of Genetic Information for Medical Purposes and Its Related Factors in Japan

Ikeda¹

2008

Public Health Genomics

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Objectives: The aim of this study was to examine the knowledge of and attitudes on the use of genetic information for medical purposes among the general public of Japan and to identify how the knowledge and attitudes correlate with gender, age and related factors. Methods: A cross-sectional survey using a self-administered questionnaire was conducted from June to July 2004. Stratified random samples of 500 adults aged from 20 to 69 years, living in A-ward, Tokyo, Japan, were analyzed using a χ² test, t test and discriminant analysis (stepwise method). Results: Findings showed ‘interested in the use of genetic information for medical research’, ‘useful for making effective use of medicine’ and ‘useful for determining disorders to which one may be susceptible in the future’ as the three related factors that influenced discrimination in respondents’ attitudes. Of these, ‘interested in the use of genetic information for medical research’ had a standardized discriminant coefficient of 0.946, indicating greatest relevance to discriminating respondents’ attitudes. The factors ‘useful for making effective use of medicine’ and ‘useful for determining disorders to which one may be susceptible in the future’ exhibited the next highest discriminant relevance. There was no significant difference in gender and age. Conclusions: This study clarified the knowledge of and attitudes on the use of genetic information for medical purposes among the general public of Japan.

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“…Some authors claim that individuals should be the owner of their tissue (Andrews and Nelkin, 1997), but most consider ownership of tissue as undesirable because people should not be able to 'sell themselves' (Dickenson, 2004;Bovenberg, 2005). Most commentaries miss the true nature of property law, which is a bundle of rights ranging from a person having total ownership (including the right to 'sell') to a lesser right that is limited to control over use (Knoppers et al, 1996).…”

Section: Ownershipmentioning

confidence: 99%

Connective tissue: Cancer patients’ attitudes towards medical research using excised (tumour) tissue

et al. 2011

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The objective of this article is to explore the views of Dutch cancer patients on the use of excised and stored (tumor) tissues in medical research. Excised tissues are routinely stored in hospitals for future diagnostic use. They are also important for scientific research. This article discusses and interprets concepts of 'ownership' in the context of the increasing scientific and commercial value of tissues. We used a mixed-methods design combining quantitative data (questionnaires) with qualitative data (interviews) and observations during an intervention study. Our analysis suggests that, for patients, the stored tissue is a hypercollective good that should remain in the public sphere in order to facilitate research. The tissue is seen as connecting the donor to relatives and other patients, the hospital, and to the larger scientific community. The respondents expressed a preference for an ongoing relationship with the tissue custodian. A substantial minority of respondents consider themselves to be owners of the tissue. Notably, tumour tissue is perceived as unique and special. Patients endorse the use of extracorporeal tissue removed during medical care in scientific research. They expect reciprocity from the tissue custodian in the form of information about findings.

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ETHICAL ISSUESEthical Issues in International Collaborative Research onthe Human Genome: The HGP and the HGDP

Cited by 16 publications

References 0 publications

Einstellung zu psychiatrisch-genetischer Forschung und pr�diktiver Diagnostik

Einstellung zu psychiatrisch-genetischer Forschung und pr�diktiver Diagnostik

The Public’s Attitudes towards the Use of Genetic Information for Medical Purposes and Its Related Factors in Japan

Connective tissue: Cancer patients’ attitudes towards medical research using excised (tumour) tissue

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