The Wellcome Trust Sanger Institute, the genomics research centre based in Cambridge, UK, is launching a survey to gauge the views of the public on how genetic research information should be used and shared.
The survey, which the Institute hopes will be the largest of its kind, is intended as a counterpoint to the report released last week by the Human Genomics Strategy Group, an independent cross-government advisory body chaired by Professor Sir John Bell.
The report made a series of recommendations to Ministers, with the overarching goal of enabling UK patients to benefit from genomic technology that can improve understanding of the nature of disease and allow tailoring of treatment to patients’ individual genetic make-up.
Among the specific recommendations were that genomic data should be linked to patients’ anonymised medical records through a secure national centre to create a centralised resource for research and diagnosis.
An ethics team from the Sanger Institute in Cambridge, UK will use an online questionnaire to explore the ethical implications of whole-genome research. Anyone can participate through a dedicated website at www.genomethics.org, whether or not they have any prior knowledge of genetics.
This survey is part of “the proactive process of engaging with the public, before whole-genome studies become part of health service practice”, the Institute explained. The findings will be used to guide policy on the conduct of genome research studies.
It has been standard practice for a number of years to conduct genetic research anonymously, without sharing research findings with the participants who provided the samples. However, there is now growing pressure to change this approach, the Sanger Institute pointed out.
“We need to understand what people want from whole genome testing,” commented Dr Anna Middleton, ethics researcher at the Institute.
“Policy is being written worldwide on what researchers should share from genome studies and yet much of this is based on anecdote and intuition. We aim to address this by conducting an international study that asks members of the public, health professionals and researchers for their views.”
As Ana Nicholls, healthcare analyst at the Economist Intelligence Unit, noted, the growing importance of DNA-based research was reinforced by Roche’s US$5.7 billion hostile bid last week for US-based DNA-scanning company Illumina.
The UK is “not alone in wanting to make patients' DNA data available to researchers”, said Nicholls in response to the Human Genomics Strategy Group report. The US is debating similar measures, while Australia and New Zealand have already gone some way towards establishing DNA data banks, she observed.
Some people are also seeking this information on their own initiative, “which raises the prospect of the valuable data being captured by single private companies, including Google”, Nicholls added.
Will be controversial
Measures in the UK to link patients’ DNA data to their medical records for research and diagnosis “will still be controversial”, Nicholls warned, “partly because of privacy issues and partly because of the disclosure problem that it could cause for insurers (and perhaps employers)”.
The government will therefore “have to sell the medical and economic benefits hard to some patients”, she suggested.
There are also practical obstacles, Nicholls pointed out. “As the public accounts committee confirmed in report last August, the National Health Service has a distinctly patchy record in implementing medical records systems, which does not bode well for this project.”