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Source
Jurid Rev. 2004;2004(1):65-74
Publication Type
Article
Date
2004
Author
Ragnar Adalsteinsson
Author Affiliation
Supreme Court, Iceland.
Source
Jurid Rev. 2004;2004(1):65-74
Date
2004
Language
English
Publication Type
Article
Keywords
Biological Specimen Banks
Computer Security
Confidentiality
Conflict of Interest
Databases, Factual - ethics - legislation & jurisprudence
Databases, Genetic - ethics - legislation & jurisprudence
Democracy
Freedom
Genetic Privacy
Genetic Research - ethics - legislation & jurisprudence
Genetics, Population - ethics - legislation & jurisprudence
Humans
Iceland
Industry
Legislation as Topic
Medical Records
Physicians
Politics
Presumed Consent - ethics
Public Policy
Research Support as Topic
Social Justice
Abstract
This paper examines an act of the Icelandic Parliament on health-sector databases. Both the legislation itself and the manner in which it was presented by the Government to the Parliament and the general public raise various questions about democratic parliamentary procedures, community consultation, autonomy, privacy, professional confidence, control of health data in hospitals and business relationships between medical doctors and biotechnology corporations. A major question to be asked is: In whose interest is it that such sensitive data are handed over to for-profit corporations? Furthermore, is it within the authority of the legislature to authorize politically appointed boards of health institutes to transfer such data without the direct informed consent of the patient and without the relevant physicians' having a say? Does experience teach us to entrust private companies with sensitive personal data? Should the Government be involved in the research policy-making of the biotechnology companies that have been given access to the genetic data of a population, or should the profit motive be the sole deciding influence? That is, should the interest of the shareholders of the companies prevail over the interest of underprivileged groups who are most in need of new methods or medicine to alleviate their situation due to incurable diseases? Or is the invisible hand of the market the only competent decision-maker? Finally, will the proliferation of databases containing sensitive personal data, such as human genetic data, limit our personal liberty?
PubMed ID
16755701 View in PubMed
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A nation's genes for a cure to cancer: evolving ethical, social and legal issues regarding population genetic databases.

https://arctichealth.org/en/permalink/ahliterature81982
Source
Columbia J Law Soc Probl. 2004;37(3):359-411
Publication Type
Article
Date
2004
Author
Hsieh Alice
Author Affiliation
Columbia Journal of Law and Social Problems, Columbia University, USA.
Source
Columbia J Law Soc Probl. 2004;37(3):359-411
Date
2004
Language
English
Publication Type
Article
Keywords
Access to Information - legislation & jurisprudence
Biological Specimen Banks - legislation & jurisprudence
Confidentiality - legislation & jurisprudence
Databases, Genetic - ethics - legislation & jurisprudence
Disclosure - legislation & jurisprudence
Estonia
Ethics Committees, Research
Family
Genetics, Population
Great Britain
Haplotypes - genetics
Human Genome Project
Humans
Iceland
Informed Consent - legislation & jurisprudence
Internationality
Presumed Consent - legislation & jurisprudence
Refusal to Participate - legislation & jurisprudence
Singapore
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.
PubMed ID
16755693 View in PubMed
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