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Determining the Likelihood of Variant Pathogenicity Using Amino Acid-level Signal-to-Noise Analysis of Genetic Variation

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Ethics in prevention science involving genetic testing.

Celia B Fisher¹, Erika L Harrington McCarthy

¹Fordham University Center for Ethics Education, Dealy Hall, 441 East Fordham Road, Bronx, NY 10458, USA. fisher@fordham.edu

Prevention Science : the Official Journal of the Society for Prevention Research

|January 29, 2013

Summary

Genomic science advances prevention research for mental disorders. Ethical guidelines lag behind, requiring careful consideration of genetic data privacy, disclosure, and informed consent for participants and families.

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Area of Science:

Genomics and Prevention Science
Mental Health Research Ethics

Background:

Rapid advancements in genomics, spurred by the Human Genome Project, are enhancing our understanding of genetic factors in mental disorders.
Ethical considerations surrounding the integration of genetic data into prevention science have not advanced at the same pace as data collection and research dissemination.

Purpose of the Study:

To discuss critical ethical issues arising from the use of genetic data in prevention science.
To highlight challenges in managing personal genetic information, family implications, and informed consent processes.
To provide recommendations for ethical decision-making in genomic prevention research.

Main Methods:

Review of ethical challenges in genetic data integration within prevention science.
Analysis of issues related to withholding/disclosing genetic information.
Examination of recruitment, data collection, and informed consent in various research contexts (adult, pediatric, longitudinal, biobanks).

Main Results:

Ethical dilemmas include decisions on genetic information disclosure and potential revelation of family members' genetic data.
Informed consent processes require careful consideration of timing and nature, especially in pediatric and longitudinal studies.
Justice and research burdens are key considerations, emphasizing the protection of informational rights.

Conclusions:

Prevention scientists have unique responsibilities to ensure genomic science upholds participant, family, and community informational rights.
Recommendations are provided to guide ethical decision-making in the integration of genetic data into prevention research.
Addressing ethical challenges is crucial for the responsible advancement of genomic applications in mental disorder prevention.