Results Of Major Survey On Attitudes To Human Genetics

A major new MORI survey of the Government's People's Panel has found broad support for the benefits offered by human genetic research, but some misgivings about the regulation of such developments in the future.

Over 1,000 people were surveyed, representative of the UK population. Commissioned by the Human Genetics Commission, the report reveals wide variations in the views of men and women, young and old, amongst black and Asian respondents, and amongst those with higher or lower knowledge of genetics.

The survey results are published as the Human Genetics Commission continues to invite responses to its consultation paper 'Whose Hands on Your Genes?', which asks for views from across the UK on the future use of genetic information and what protections should be put in place to prevent unfair discrimination or exploitation in areas such as insurance, employment and police forensic and medical databases.

Highlights of the survey include:

• Nine in ten people agree that genetic developments could and should be used to diagnose and bring cures for many diseases.
• At the same time a third are concerned that research on human genetics is tampering with nature, and is unethical. Women are more likely than men to think this (women 37% agree, men 28%), as are Asian respondents, those who say their religion or faith has an influence on the decisions they make, and those who know least about genetics.
• Three-quarters of people feel they have too little information on controls on biological developments, and most have little or no confidence that rules and regulations are keeping pace with new scientific developments.
• Four out of five people believe that such information should not be used for setting insurance premiums
• 94% of respondents think human genetic information should be used to identify and eliminate possible offenders from police enquiries. Whilst a majority also think it appropriate to take DNA samples from those charged with drink driving or burglary, there is considerably less support for their use with fraud and shoplifting. Young people are only half as likely as those over 65 to support such a course of action. Opinion is equally divided as to whether samples should be kept in the event of acquittal.
• Only one in twenty of those aged 16-24 believe that couples at risk of having a child with a serious genetic disorder should be discouraged from having children of their own. By contrast, more than half of people aged over 55 agree.
• Black and Asian respondents are significantly less likely than white respondents to agree that new genetic improvements will bring cures for many diseases. Across a broad range of questions Asian respondents reflect a considerable trust in others and in institutions, whereas Black respondents do not.

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

"These findings give us an intriguing insight into people's hopes and worries about future developments in genetic technology. Many people are looking forward to what the future might bring but at the same time there are a number of important reservations about the choices we may be faced with."

"In general, attitudes vary enormously according to the perceived medical and safety benefits of the technology. The variations between different groups of people in our society are enlightening and it is important that we and others take careful note of these views. They will certainly be very helpful as we prepare our advice to Ministers on many of these issues."

"We hope that people will continue to send us more detailed thoughts and opinions in response to our current consultation."

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?

Technical details

1. The MORI report 'Public Attitudes to Human Genetic Information' is available on the HGC's website at www.hgc.gov.uk or free from PO Box 777, London SE1 6XH, by faxing: 01623-724 524, or by e-mailing: [email protected]. Embargoed copies of the report are available on Thursday 1 March at www.servicefirst.gov.uk/index/pphome.htm
2. In November 2000 HGC published a discussion document 'Whose hands on your genes' as part of its review on the storage, protection and use of genetic information. The consultation period was originally due to end on 28 February but has been extended to 23 March 2001. Copies are available from contact details above.
3. 1,038 interviews were conducted with members of the People's Panel between 6th October and 17th December 2000. The results have been weighted to the profile of all adults in the UK. This main sample was supplemented with additional booster interviews among Black and Asian respondents to ensure sufficiently large base sizes for separate analysis.
4. The People's Panel is a study established by the Modernising Public Services Group at the Cabinet Office in Summer 1998. It is a randomly recruited panel of the general public, aged 16 and over, that is representative of the UK population. At original recruitment in 1998, 5,000 members of the public were recruited. Since then a further 1,000 members have been recruited to the Panel, with an additional 830 members from ethnic minority communities. Over the life-time of the Panel 725 members have asked to leave, giving a total size of 6,105.
5. 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.

6. The HGC reports to Health and Science Ministers.
7. 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.
8. As part of this work HGC is conducting a review of the wider social and ethical issues around the use of genetic test results in insurance. HGC is working closely with the Genetics and Insurance Committee who are responsible for assessing applications for the use of test results from insurers.

THE MORI REPORT - SUMMARY OF MAIN FINDINGS

Three-quarters of people feel they have too little information on controls on biological developments, and most have little or no confidence that rules and regulations are keeping pace with new scientific developments.

Older respondents tend to have greater confidence than those under 55 that the system of rules and regulations is keeping pace with biological developments and research, as do Asian respondents.

Medical uses

Nine in ten people agree that genetic developments could and should be used to diagnose and bring cures for many diseases, but at the same time a third are concerned that research on human genetics is tampering with nature. Scots and those who say they have a religion or a faith are significantly more likely to think that human genetics research is unethical. Over two-thirds of people back the use of genetic information to correct defective genes.

Whilst there is support for the use of genetic testing for personal information purposes, such as assessing whether a child is likely to develop disorders in later life, there was strong opposition to the technology being used to help parents choose the sex of their baby.

Those respondents who are most likely to have young children (respondents aged 25-34) are more likely than other age groups to agree that the new genetic developments will mean children who are healthier and free from inherited disabilities.

Only one in twenty of those aged 16-24 believe that couples at risk of having a child with a serious genetic disorder should be discouraged from having children of their own. By contrast, more than half of people aged over 55 agree.

Black and Asian respondents and people from Wales and Northern Ireland are significantly less likely than other respondents to agree that new genetic improvements will bring cures for many diseases (78% and 76% respectively, compared to 89% among white respondents). Respondents from Wales and Northern Ireland are also significantly less likely to feel it is appropriate, or to be personally willing, to be tested by a doctor for an inherited disease.

Asian respondents are more likely to think that human genetic research is unethical than other respondents.

Insurance and employment

There is considerable concern about the use of genetic information by insurance companies or employers.

Four out of five people believe that such information should not be used for setting insurance premiums

Whilst 70% of people think it is inappropriate for an employer to see the results of an existing or potential employee's test, the majority feel it might be appropriate if the test indicates whether or not someone may be sensitive to certain substances they may come into contact with in their job.

Older people (over 65) and Asian and Black respondents are more likely to think that insurance companies and employers should be able to see the results of genetic tests.

Police forensic databases

94% of respondents think human genetic information should be used to identify and eliminate possible offenders from police enquiries. Whilst a majority also think it appropriate to take DNA samples from those charged with drink driving or burglary, there is considerably less support for their use with fraud and shoplifting.

Older people (over 65) are considerably more likely than younger respondents to back the taking of DNA samples for a given crime. However they are much less in favour than those under 25 of genetic information being retained after the individual has been acquitted, and less happy for the police to have access to other genetic databases.

Opinion is evenly split on whether such samples should be retained on the police genetic database if an individual is acquitted. Men are significantly more likely than women to say that the information should be removed.

While overwhelmingly supportive, Black and Asian respondents are less likely than others to agree that police should take DNA samples from anyone charged with murder or sexual offences. Black respondents are less likely to support the idea of DNA samples being taken from those charged with shop-lifting offences, although Asian respondents are more in favour of samples being taken from people charged with drink-driving offences.

Attitudes vs genetic knowledge

The report also looks at the views of those with high, medium and low levels of genetic knowledge. They are derived groups based on respondents' ability to correctly identify sickle cell anaemia, huntingtons disease, cystic fibrosis and eye colour as totally inherited characteristics.

Respondents with a high level of knowledge about genetics have markedly different views from less well informed respondents on a range of issues. They are more likely to agree that new genetic developments will bring cures for many diseases (high level of genetic knowledge 92% agree, medium 89% agree and only 75% agree among those with low levels of knowledge). In contrast, those who know least about genetics are most likely to think that genetic research is tampering with nature, and therefore unethical.

Respondents with high levels of knowledge are more likely to be aware that genetic information can be used to set insurance levels, but they are also more likely to oppose its use in this way.

Those with low levels of genetic knowledge are more likely to think it appropriate for insurance companies or employers to have access to peoples' genetic information, and are more happy for the police to take DNA samples from individuals charged with a crime.

Desire for more information on the regulation of biological developments is in inverse proportion to the existing knowledge of respondents - with those with low levels of knowledge about genetics more likely than others to say they already receive 'the right amount' of information on the rules and regulations of biological developments.

Public attitudes to human genetic information [pdf format - 1,753K]