UK DNA Database and the European Court of Human Rights: Lessons that India can Learn from Its Mistakes

On September 24, 2012, the Centre for Internet & Society in collaboration with the Alternative Law Forum invites the public to a talk with international experts, Helen Wallace from GeneWatch, UK and Jeremy Gruber from the Council for Responsible Genetics in the United States. The meeting will be held at the Centre for Internet & Society office in Bangalore from 5.00 p.m. to 7.30 p.m.

The UK National DNA Database was the first to be established, in 1995, and is the largest per capita in the world. A major DNA expansion programme began in 2000 but is now being rolled back by the implementation of a new Protection of Freedoms Act, following a judgment against the UK government by the European Court of Rights. The lessons for the UK experience for the DNA Bill in India will be discussed, including the need for safeguards to protect privacy and rights, maintain public trust in police use of DNA, and prevent miscarriages of justice.

Dr. Helen Wallace

Dr. Helen Wallace is Director of GeneWatch UK, a not-for-profit organisation which aims to engage members of the public in ensuring that genetic science and technologies are used in the public interest. She is the author of numerous articles and book chapters on the social and ethical issues raised by DNA databases and is widely quoted in the UK press. Helen provided expert evidence to the applicants in the case of S. and Marper v. the UK at the European Court of Human Rights, in which the Court ruled unanimously that the indefinite retention of innocent people's DNA database records was in breach of the European Convention on Human Rights. She has supplied both oral and written evidence on this issue to numerous parliamentary committees including the Scottish Parliament’s Justice Committee and the UK Science and Technology, Home Affairs and Constitutional Committees, as well as the scrutiny committee for the Protection of Freedoms Act, 2012. This new Act requires the removal of about a million innocent people's records from the UK National DNA Database and the destruction of all stored biological samples.

Jeremy Gruber

Jeremy Gruber is the President and Executive Director of Council for Responsible Genetics. Jeremy joined CRG in March 2009. Previously he served as the legal director of the National Workrights Institute, a human rights organization dedicated to the rights of American workers. Prior to that he served as the field director for the ACLU’s National Taskforce on Civil Liberties in the Workplace. Jeremy has worked for over a decade on genetic non-discrimination legislation at the state and Federal level. He helped author and pass numerous state laws on genetic non-discrimination. Jeremy is a founder and executive committee member of the Coalition for Genetic Fairness, a group of 500 organizations that advocated for genetic non-discrimination legislation on Capitol Hill and played a major role in the recently passed Genetic Information Non-Discrimination Act (GINA) by Congress. He worked closely with members of Congress and staff on GINA language as well as strategy and support. He is a prolific writer on privacy issues and is often consulted by state legislatures. He is regularly featured in print, radio and television. Jeremy holds a Juris Doctor (J.D.) from St. John’s University School of Law and a B.A. in Politics from Brandeis University.

Overview and Concerns Regarding the Indian Draft DNA Profiling Act