Book contents
- Frontmatter
- Contents
- Contributors
- Preface
- Section 1 Introduction
- Section 2 Research ethics
- 4 Improving the informed consent process in research with substance-abusing participants
- 5 Ethical considerations in genetic research with children affected by parental substance abuse
- 6 Protecting privacy in genetic research on alcohol dependence and other addictions
- 7 Certificates of Confidentiality: Uses and limitations as protection for genetic research on addiction
- 8 Ethical issues in human genomic databases in addiction research
- 9 Should addiction researchers accept funding derived from the profits of addictive consumptions?
- 10 Ethical issues related to receiving research funding from the alcohol industry and other commercial interests
- Section 3 Translating addiction research
- Section 4 Conclusions
- Index
- References
6 - Protecting privacy in genetic research on alcohol dependence and other addictions
from Section 2 - Research ethics
Published online by Cambridge University Press: 05 September 2012
- Frontmatter
- Contents
- Contributors
- Preface
- Section 1 Introduction
- Section 2 Research ethics
- 4 Improving the informed consent process in research with substance-abusing participants
- 5 Ethical considerations in genetic research with children affected by parental substance abuse
- 6 Protecting privacy in genetic research on alcohol dependence and other addictions
- 7 Certificates of Confidentiality: Uses and limitations as protection for genetic research on addiction
- 8 Ethical issues in human genomic databases in addiction research
- 9 Should addiction researchers accept funding derived from the profits of addictive consumptions?
- 10 Ethical issues related to receiving research funding from the alcohol industry and other commercial interests
- Section 3 Translating addiction research
- Section 4 Conclusions
- Index
- References
Summary
Introduction
From the official beginning of the Human Genome Project in 1990 to the present, genomic and genetic research has been characterized by its enormous scale. Genome researchers often analyze and manipulate vast data sets derived from the 3.2 billion base-pair human genome. Other new “omics” fields, such as proteomics, transcriptomics, and metabonomics, also involve large-scale research undertakings. To facilitate these efforts, research biobanks containing many thousands of biological specimens are used to provide statistically significant numbers of even rare genomic variants. Genome research also requires sophisticated, high-speed computational technology for genome-wide association studies and other analytical techniques. The phenotypic data for researchers increasingly come from electronic health records (EHR), another automated and large-scale contribution to the scientific enterprise.
Some areas of genome research involve especially sensitive or stigmatizing health conditions, such as behavioral health. For example, substantial genetic research has established correlations between certain genes and a propensity to addictive behavior, including gambling and the use of alcohol, tobacco, and various licit and illicit substances (Blum et al., 2000; Caron et al., 2005; Goldman et al., 2005). When large-scale biomedical research and powerful computational technologies are combined and applied to research involving sensitive health conditions, a range of important privacy issues are raised. These issues include: the consent needed for using biological specimens and health records, even if de-identified; the tangible and intangible harms, including group-based harms, that can flow from disclosure of genetic information; and the autonomy interests of individuals in controlling the uses of their specimens and health records.
- Type
- Chapter
- Information
- Genetic Research on AddictionEthics, the Law, and Public Health, pp. 84 - 96Publisher: Cambridge University PressPrint publication year: 2012