title: Biobanking and Privacy in India.
abstract: Biobank-based research is not specifically addressed in Indian statutory law and therefore Indian Council for Medical Research guidelines are the primary regulators of biobank research in India. The guidelines allow for broad consent and for any level of identification of specimens. Although privacy is a fundamental right under the Indian Constitution, courts have limited this right when it conflicts with other rights or with the public interest. Furthermore, there is no established privacy test or actionable privacy right in the common law of India. In order to facilitate biobank-based research, both of these lacunae should be addressed by statutory law specifically addressing biobanking and more directly addressing the accompanying privacy concerns. A biobank-specific law should be written with international guidelines in mind, but harmonization with other laws should not be attempted until after India has created a law addressing biobank research within the unique legal and cultural environment of India.
authors.affiliation: Sachin Chaturvedi, Ph.D., is Director General of RIS and was Global Justice Fellow at the Yale University. He has written on technology and regulation and Science, Technology and Innovation issues and has been a consultant for many organizations of the UN and departments of Government of India. Krishna Ravi Srinivas, Ph.D., is a consultant with RIS and holds a PhD from National Law School University of India. He has written on intellectual property rights and biotechnology regulation and is Managing Editor of Asian Biotechnology and Development Review (ABDR). Vasantha Muthuswamy, M.D., was Senior Deputy Director General and Chief of the Division of Basic Medical Sciences, Traditional Medicine and Bioethics, and the Division of Reproductive Health and Nutrition, of the Indian Council of Medical Research. She is recognized as a pioneer in bioethics policy and regulation in India and has worked with WHO and other agencies on bioethics.
authors.forename: Sachin
authors.initials: S
authors.lastname: Chaturvedi
authors.affiliation: Sachin Chaturvedi, Ph.D., is Director General of RIS and was Global Justice Fellow at the Yale University. He has written on technology and regulation and Science, Technology and Innovation issues and has been a consultant for many organizations of the UN and departments of Government of India. Krishna Ravi Srinivas, Ph.D., is a consultant with RIS and holds a PhD from National Law School University of India. He has written on intellectual property rights and biotechnology regulation and is Managing Editor of Asian Biotechnology and Development Review (ABDR). Vasantha Muthuswamy, M.D., was Senior Deputy Director General and Chief of the Division of Basic Medical Sciences, Traditional Medicine and Bioethics, and the Division of Reproductive Health and Nutrition, of the Indian Council of Medical Research. She is recognized as a pioneer in bioethics policy and regulation in India and has worked with WHO and other agencies on bioethics.
authors.forename: Krishna Ravi
authors.initials: KR
authors.lastname: Srinivas
authors.affiliation: Sachin Chaturvedi, Ph.D., is Director General of RIS and was Global Justice Fellow at the Yale University. He has written on technology and regulation and Science, Technology and Innovation issues and has been a consultant for many organizations of the UN and departments of Government of India. Krishna Ravi Srinivas, Ph.D., is a consultant with RIS and holds a PhD from National Law School University of India. He has written on intellectual property rights and biotechnology regulation and is Managing Editor of Asian Biotechnology and Development Review (ABDR). Vasantha Muthuswamy, M.D., was Senior Deputy Director General and Chief of the Division of Basic Medical Sciences, Traditional Medicine and Bioethics, and the Division of Reproductive Health and Nutrition, of the Indian Council of Medical Research. She is recognized as a pioneer in bioethics policy and regulation in India and has worked with WHO and other agencies on bioethics.
authors.forename: Vasantha
authors.initials: V
authors.lastname: Muthuswamy
mesh_terms: D018070:Biological Specimen Banks; D035843:Biomedical Research; D006806:Human Rights; D006801:Humans; D007194:India; D018907:Privacy