Hostname: page-component-745bb68f8f-5r2nc Total loading time: 0 Render date: 2025-01-11T22:55:51.005Z Has data issue: false hasContentIssue false
  • English
  • Français

Biobanking and Privacy in India

Published online by Cambridge University Press:  01 January 2021

Sachin Chaturvedi ,
Krishna Ravi Srinivas  and
Vasantha Muthuswamy
Get access Rights & Permissions [Opens in a new window]

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.

Type
Symposium Articles
Information
Journal of Law, Medicine & Ethics , Volume 44 , Issue 1: Part II: Harmonizing Privacy Laws to Enable International Biobank Research , Spring 2016 , pp. 45 - 57
Copyright
Copyright © American Society of Law, Medicine & Ethics 2016

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

World Health Organization (WHO), India: WHO Statistical Profile 2015, available at <http://www.who.int/gho/countries/ind.pdf?ua=1> (last visited January 27, 2016).+(last+visited+January+27,+2016).>Google Scholar
Ministry of Statistics and Program Implementation, Government of India, New Delhi Millennium Development Goals: Country Report 2015.Google Scholar
Yadav, S. and Arokiasamy, P., “Understanding Epidemiological Transition in India,” Global Health Action 7 (2014), available at <http://www.globalhealthaction.net/index.php/gha/article/view/23248> (last visited January 27, 2016).CrossRefGoogle Scholar
Organization for Economic Cooperation and Development (OECD) “OECD Health Statistics 2014: How Does India Compare,” available at <http://www.oecd.org/els/health-systems/Briefing-Note-INDIA-2014.pdf> (last visited January 27, 2016).+(last+visited+January+27,+2016).>Google Scholar
Choudhury, M. and Nath, H. K. A., An Estimate of Public Expenditure on Health in India, National Institute of Public Finance and Policy (2012).Google Scholar
Hooda, S. K., Changing Pattern of Public Expenditure on Health in India, ISID PHFI Collaborative Research Centre Institute for Studies in Industrial Development (2012).Google Scholar
Limaye, N., “Pharmacogenomics, Theranostics and Personalized Medicine – The Complexities of Clinical Trials: Challenges in the Developing World,” Applied & Translational Genomics 2 (2013): 17–21.CrossRefGoogle Scholar
Chen, H. and Pang, T., “A Call for Global Governance of Bio-banks,” Bulletin of the World Health Organization 93, no. 2 (2015): 113–117.Google Scholar
Indian Council of Medical Research, Ethical Guidelines for Biomedical Research on Human Participants (New Delhi: ICMR; 2006): at 71.Google Scholar
Vaz, M. et al., “Ethical Challenges in Biobanking: Moving the Agenda Forward in India,” Indian Journal of Medical Ethics 11, no. 2 (2014): 79–88.Google Scholar
Sapien Biosciences, “Our Approach to Biobanking,” available at <http://sapienbio.co.in/biobank/ethics/> (last visited January 27, 2016).+(last+visited+January+27,+2016).>Google Scholar
Kharak Singh vs. The State Of U. P. & Others on 18 December, 1962, 1963 AIR 1295, 1964 SCR (1) 332, available at <http://indiankanoon.org/doc/619152/> (last visited January 27, 2016).+(last+visited+January+27,+2016).>Google Scholar
R. Rajagopal vs. State Of T.N on 7 October, 1994, 1995 AIR 264, 1994 SCC (6) 632, available at <http://indiankanoon.org/doc/501107/> (last visited January 27, 2016).+(last+visited+January+27,+2016).>Google Scholar
Mr. Surupsingh Hrya Naik vs. State Of Maharashtra through… on March 23, 2007, AIR 2007 Bom 121, 2007 (109) Bom L R 844, available at <http://indiankanoon.org/doc/570038/> (last visited January 27, 2016).+(last+visited+January+27,+2016).>Google Scholar
Id.Google Scholar
Mishra, N. N. et al., “Privacy and the Right to Information Act, 2005,” Indian Journal of Medical Ethics 5, no. 4 (2008): 1–5.Google Scholar
Arjesh Kumar Madhok vs. Centre for Fingerprinting & Diagnostics (CDFD) 2007, available at <http://www.rti.india.gov.in/cic_decisions/Decision_26102007_06.pdf> (last visited June 20, 2015).+(last+visited+June+20,+2015).>Google Scholar
Radiological & Imaging Association vs. Union of India 26 August, 2011, available at <http://indiankanoon.org/doc/680703/> (last visited June 20, 2015).+(last+visited+June+20,+2015).>Google Scholar
Id.Google Scholar
Selvi & Ors vs. State Of Karnataka & Anr on May 5, 2010, available at <http://indiankanoon.org/doc/338008/> (last visited June 21, 2015).+(last+visited+June+21,+2015).>Google Scholar
Id.Google Scholar
Mrs. Neera Mathur v. Life Insurance Corporation of India and Anr. on October 31, 1991, 1992 AIR 392, 1991 SCR Supl. (2) 146 <http://indiankanoon.org/doc/832598/> (last visited January 27, 2016).+(last+visited+January+27,+2016).>Google Scholar
Ms. X v. Mr. Z And Anr. on December 20, 2001, 96 (2002) DLT 354, (2002) DMC 448 <http://indiankanoon.org/doc/627683/> (last visited January 27, 2016).+(last+visited+January+27,+2016).>Google Scholar
793 P.2d 479 (Cal. 1990).Google Scholar
Rohit Shekhar v. Narayan Dutt Tiwari & Anr on 27 April, 2012 <http://indiankanoon.org/doc/170781909/> (last visited January 27, 2016).+(last+visited+January+27,+2016).>Google Scholar
Id.Google Scholar
Bhabani Prasad Jena Etc v. Convenr.Sec.Orissa S.Comn.For Women and Anr. on August 3, 2010, available at <http://indiankanoon.org/doc/486945/> (last visited January 27, 2016).+(last+visited+January+27,+2016).>Google Scholar
Id.Google Scholar
Mr. ‘X’ v. Hospital ‘Z’ on September 21, 1998, available at <http://indiankanoon.org/doc/382721/> (last visited January 27, 2016).+(last+visited+January+27,+2016).>Google Scholar
Id.Google Scholar
M. Vijaya v. Chairman and Managing Director, on August, 29, 2001, I (2002) ACC 32, 2002 ACJ 32 <http://indiankanoon.org/doc/859256/> (last visited January 27, 2016).+(last+visited+January+27,+2016).>Google Scholar
Sharda v. Dharmpal 2003 (2) CTC 760, AIR2003SC3450, available at <http://jajharkhand.in/judg/sc/pdf/EVIDENCE%20ACT/compel%20to%20undergo%20medical%20examination/Sharda%20Vs%20Dharampal-2003%202%20CTC%20760.pdf> (last visited January 27, 2016).+(last+visited+January+27,+2016).>Google Scholar
Id.Google Scholar
Greenleaf, G., “India’s Draft The Right to Privacy Bill 2014 – Will Modi’s BJP Enact It?” Privacy Laws & Business International Report 129, no. 48 (2014): 21–24.Google Scholar
Srinivas, N. and Biswas, A., “Protecting Patient Information in India: Data Privacy Law and Its Challenges,” NUJS Law Review 5, no. 3(2012): 411-424, available at <http://nujslawreview.org/wp-content/uploads/2015/02/06_nimisha__arpita.pdf> (last visited January 27, 2016).Google Scholar
Acharya, B., “The Four Parts of Privacy in India,” Economic and Political Weekly 50, no. 22 (2015): 32-38, at 37.Google Scholar
Greenleaf, G., “India—Confusion Raj, with Outsourcing,” in Asian Data Privacy Laws: Trade and Human Rights Perspectives (Oxford: Oxford University Press, 2014): at 413.Google Scholar
“Report of the Group of Experts on Privacy, chaired by Justice A.P. Shah,” Planning Commission of India, 2012, available at <http://planningcommission.nic.in/reports/genrep/rep_privacy.pdf> (last visited January 27, 2016).+(last+visited+January+27,+2016).>Google Scholar