HGC Launches Consultation On The Future Of Genetic Information

A new survey reveals that most people (70%) feel they have too little information about controls on biological developments, and 71% have little or no confidence that rules and regulations are keeping pace with scientific developments.

These interim findings underline the importance of the Human Genetics Commission's major public consultation on the future use of genetic information, launched today.

The survey, commissioned by the HGC using the People's Panel, also shows that the vast majority of people believe that human genetic information could and should be used for understanding disease or identifying criminals, but should not be used for setting insurance premiums or for parents to choose the characteristics of children.

Entitled 'Whose hands on your genes?', the consultation poses tough questions about what protections we should put in place to prevent unfair discrimination or exploitation, whilst benefiting from the exciting developments in human genetics. It outlines the recent advances in analysing people's genetic information, and discusses the areas likely to be affected, such as insurance policies, medical and forensic databases, and even employment.

Baroness Helena Kennedy QC, Chair of the Human Genetics Commission, said:

"People understand that advances in human genetics will have a big impact on our lives, and that much good could come from that. But most of us are nervous and confused about where technology might be leading, and the potential challenges to privacy and confidentiality."

"We know from our survey that people are worried that these developments might lead to discrimination or exploitation, and are sceptical of the law's ability to keep up with human genetics."

"In 'Whose hands on your genes' the Human Genetics Commission aims to outline where this technology has got to, and to identify the key questions which society will face in the next few years. We want to hear what people think about these issues, which is why we are organising today's public meeting in Newcastle."

Some people feel that current confidentiality and data protection laws are enough to protect genetic information, which could be treated in the same way as other medical information. Other people feel that it should be treated differently, perhaps because it is unique to each person, or because it can be used to predict disorders a person may develop in the future.

Key questions in 'Whose hands on your genes' include:

• How different and special is genetic information compared to other types?
• Does it need special protection?
• Should there be controls on insurers' access to your genetic information, and on what they can do with it?
• Should your employer have a right to know if you are likely to become prone to an inherited disease or disability? What about if your tests reveal that you may become a risk to colleagues or others in your place of work?
• Should the police take DNA samples from people suspected of murder? But what about drink driving or fraud?
• Who do you think should be entrusted with your genetic information so that confidentiality can be maintained and information is readily accessible for long term health care planning?

Today members of the Human Genetics Commission will be discussing these issues in Newcastle with people from around the North-East at the International Centre for Life in Newcastle.

For more information about the Human Genetics Commission see the website at www.hgc.gov.uk. Media enquiries should be made to 020-7838 4897, or (on Monday) 07967-153 753

Technical details

On 27th November the members of HGC will be touring the LIFE Interactive World with 200 15-18 year olds, and later holding discussions with the students and members of the public. For more information contact the HGC press office

The International Centre for Life in Newcastle is a 16370m campus for the life sciences. It combines entertainment, education, genetic research, ethics and commercial application on a single site in the centre of Newcastle upon Tyne. Its overarching aim is to promote understanding of life sciences in the 21st century.

The Human Genetics Commission's terms of reference are:

• To analyse current and potential developments in human genetics and advise Ministers on:
  • the likely impact on human health and healthcare;
  • the social, ethical, legal and economic implications.
• To advise on strategic priorities in the delivery of genetic services by the NHS.
• To advise on strategic priorities for research.
• To develop and implement a strategy to involve and consult the public and other stakeholders and encourage debate on the development and use of human genetic technologies and advise on ways of increasing public knowledge and understanding.
• To co-ordinate and exchange information with relevant bodies in order to:
  • identify and advise on the effectiveness of existing guidance and of the regulatory and advisory framework as a whole, taking account of European and global dimensions;
  • look at the lessons learnt from individual cases requiring regulatory decision to build up a wider picture;
• To consider specific issues related to human genetics and related technologies as requested by Ministers.
• To operate in accordance with best practice for public bodies with regard to openness, transparency, accessibility, timeliness and exchange of information.

A key role of the HGC is to promote debate, to listen and gather public and other stakeholders' views, to consider these thoroughly and to provide its expert advice. For a full copy of the HGC workplan please go to the website at www.hgc.gov.uk

The HGC reports to Health and Science Ministers.

The HGC was established following the Government's Review of the Advisory and Regulatory Framework for Biotechnology in May 1999 and incorporates the former roles of the Advisory Committee on Genetic Testing, the Advisory Group on Scientific Advances in Genetics and the Human Genetics Advisory Commission.

Extract from the People's Panel survey on some of the issues in "Whose hands on your genes?"

These results are based on 788 face-to-face interviews conducted by MORI with People's Panel members between 6 October - 14 November. (The People's Panel is a randomly recruited nationally representative panel of the UK general public aged 18+, established by the Cabinet Office).

These are only interim findings, and the full results based on over 1,000 interviews will be released later. The interim results are weighted to the profile of all adults in the UK.

Knowledge and attitudes

Most agree developments in human genetics will bring cures for many diseases (90%) and healthier babies free from inherited disabilities (70%).

BUT over half (56%) agree that if people have access to their genetic information they will know too much about them and a substantial minority (30%) that genetic research is tampering with nature and therefore unethical.

The vast majority (85-96%) agreed that human genetic information could and should be used, for understanding human disease and treatments, for identifying criminals and for determining family relationships (paternity testing).

86% agrees that people should always be asked for their permission for blood or tissues to be used in a genetic test.

70% felt that they had too little information about controls on biological developments. Only 2% felt that they had too much information.

71% had no confidence at all or only a little confidence that rules and regulations were keeping pace with developments. One in five people (21%) had a fair amount of confidence.

Insurance

Whilst 61% agree that genetic test results could be used for setting insurance premiums, only 8% think they should be used.

A total of 76% disagree that insurance companies should be able to see genetic test results to assess whether premiums should go up or down (58% strongly disagree).

Just over half of people (54% - 60%) think that it is inappropriate to disclose genetic test results in applications for life, health and long-term care insurance. However, one in three (35-38%) thinks that it is appropriate for these types of insurance.

Employment

There was support for the use of genetic information to see if new or existing employees were sensitive to something (e.g. chemicals) at work (64-70%).

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