Genetics and Human Behaviour: The Ethical Context
Appendix 2: Consultation with the public
A consultation with the public was held between March and July 2001. Approximately 1,500 consultation documents were disseminated and 111 responses were received from individuals and organisations. 37 were from individuals affiliated to academic institutions, 27 were from individuals who did not indicate any affiliation, and 44 were representatives of organisations. The responses came not only from the UK, but also the US, Israel, Australia and New Zealand. Those who responded are listed below and the Working Party is grateful to them all. Some of the main themes to emerge from the consultation responses included:
A summary of the responses to specific questions posed by the consultation is set out below. It is not intended to constitute a statistical analysis of the answers, but to reflect the issues and concerns that were raised.
Why study behavioural genetics?
What do you think are the likely advantages and disadvantages of research in behavioural
genetics?
Possible advantages of the research in behavioural genetics were identified by a number of respondents. They included:
Possible disadvantages of the research were also submitted, including:
Do you think that behavioural genetics has special features?
There was a general feeling that behavioural genetics does have special features because behaviour is integral to our identity. The research raises questions about consciousness and what it means to be human, and is therefore likely to arouse strong feelings.
Should there be limits to scientific inquiry in this field?
The most common response to this question was that there should not be limits to scientific inquiry in this field, providing that research is carried out within defined ethical boundaries. The central problem was seen to be not the research itself, but the potential applications of the research. Public debate about the value and uses of the research, and potential constraints on the uses of information were therefore seen to be important. It was felt to be undesirable to censor research and several respondents suggested that it was better to carry out the research in the UK, where it could be regulated, rather than elsewhere.
In your view, will research in behavioural genetics have a negative or positive impact on research into social and environmental issues?
Opinion was evenly divided on this question. Those concerned about research in behavioural genetics felt that ‘geneticisation’ or ‘medicalisation’ could mean that less attention would be paid to educational and social influences. There was concern that a focus on a simple deterministic model would be seen as an easy solution that governments would grasp. However, others believed that it might have a more positive impact. One suggestion was that, in the long term, there might be greater concentration on environmental factors as a result of the improved understanding of genetic influences on behaviour. It was also suggested that there was a need to counter the risk of adverse consequences actively, for example by giving parallel funding for genetic and environmental research of the same topic to ensure a balanced approach.
How will findings in research in behavioural genetics be translated into practice?
Should genetic tests for behavioural traits and personality characteristics be developed? Why, or why not? Does this apply to all types of behavioural trait?
For genetic tests for behavioural traits to be accepted, it was suggested that several conditions eeded to be fulfilled. These included the requirement that the behavioural trait or characteristic in question must be likely to present a serious danger to others or to the individual; that the gene must have a major effect on the trait; that effective therapy must be available; and, most importantly, that the test must be accurate and reliable. There was some debate whether genetic testing would give added advantages over behavioural tests that are in use already, for example psychometric tests. Some felt that genetic testing would not be any more detrimental than such evidence-based clinical assessment, while others felt that genetic tests would not be any more useful and would be unnecessary. There was consensus that no one should be forced to take a test against their will.
Would the prenatal selection of behavioural and personality traits within the normal range be morally acceptable?
The vast majority felt that the prenatal selection of behavioural traits within the normal range would never be morally acceptable. Reasons cited included that the factors that influence behaviour are not just genetic but social and environmental, and the related point, that predispositions to a certain type of behaviour do not mean that the behaviour will necessarily develop later in life. It was suggested that prenatal selection for behavioural traits could lead to children being treated as commodities. There was also concern about reducing variation in the gene pool, and the difficulty of defining the normal range. Only three out of 100 people who responded to this question were in favour of such prenatal selection. However, pre natal selection for the avoidance of serious or life-threatening conditions was thought to be more acceptable.
What are the ethical, legal, practical and social implications of these applications of research in behavioural genetics?
What, in your view, might be the effect of research in behavioural genetics on our understanding
of health, illness, disability and abnormality?
Some respondents suggested that research in behavioural genetics should give a better understanding of health and illness, leading to important therapies and improved social and practical support. Others were concerned that the research could also help reduce prejudice. However, there were concerns about the possibility of the medicalisation of traits which are not currently thought of as medical problems. In addition, it was suggested that behavioural genetics could lead to an erosion of moral responsibility. Many respondents questioned what was meant by ‘health’ and ‘normality’, and who should decide on these definitions. It was observed that fashions, cultures and perceptions can all affect how normal behaviour is defined.
Is there a moral difference between the correction of a trait thought to be the result of a genetic abnormality or defect, and the enhancement of that same trait for a ‘normal’ individual? If so, why?
Questions about correction and enhancement were felt to raise some of the most difficult issues of all, and opinions were divided.
Those who said there was a moral difference, felt that correction was about restoring function and treating illness and suffering, and was therefore acceptable. However, enhancement was seen to be interference, or an attempt to render some people superior and was therefore viewed in a different light. The main concern was that enhancement would lead to the elimination of human diversity. Some respondents felt there was no moral difference between correction and enhancement. Many respondents referred again to the difficulty of defining the normal range. The boundaries between normal and abnormal were seen to be blurred, and changing. Cosmetic surgery, for example, could be for correction or enhancement, and was now increasingly accepted. Other issues raised included the motive for making use of an enhancement; the question of whose choice it was; and issues of the allocation of resources. It was felt that enhancement could exacerbate already existing social inequalities and lead to greater discrimination.
Is the genetic enhancement of behavioural or personality traits morally different from enhancement by non-genetic means such as education or medical intervention?
The most common response was that the means of enhancement does have a moral difference. Non-genetic means, it was suggested, can be withdrawn, terminated, ignored or forgotten. Genetic interventions were thought to be irreversible and to have a permanent effect. They were thus seen to be less acceptable. Concerns were raised about the safety and effectiveness of germline therapy. One of the most important moral issues was felt to be the possibility that genetic enhancement may remove or reduce the freedom of individuals to consent. One respondent suggested that whereas education allows greater freedom of action, genetic modification could do the opposite, enslaving an individual to our idea of what they should be.
However, some felt there was no moral difference if the end result was the same. If it was acceptable to enhance a trait by changing the environment, it should be equally acceptable to change it genetically. However, genetic enhancement was seen to be less predictable. Only one respondent expressed the view that genetic enhancement of behavioural traits is ethically superior to non-genetic enhancement, through education, since the former makes learning a pleasure rather than a pain.
Are there implications of research in behavioural genetics for our general responsibility for our own behavioural and personality traits?
Although it was felt to be difficult to predict the likely effect of the research on our concept of responsibility, many respondents felt that individuals might feel less responsible for their actions if it were shown that genes have a substantial influence on behaviour. Others felt that although research might change the way we view personal responsibility, it would not necessarily be for the worse.
What are the implications for criminal justice, and the legal process generally, of research in behavioural genetics in the areas of aggression and antisocial behaviour?
For research to be admissible as evidence, and thus to have an impact on the justice system, results would need to be conclusive and reliable. This was seen to be unlikely in the short term. However, if a genetic basis for aggression and antisocial behaviour was established, it was suggested that the increase in expert witnesses and evidence would need careful handling. Lawyers would also need instruction in behavioural genetics, to ensure they did not misrepresent genetic evidence.
A core concern was that the criminal system would break down if a genetic defence allowed pleas of no free will. It would be difficult to assign responsibility for acts. Respondents asked whether a person who has a predisposition to aggression deserves credit for not responding to provocation, and conversely, whether a person who has a predisposition to placid behaviour be punished more severely for a violent act? On the positive side however, it was suggested that research in behavioural genetics could influence the methods used to punish, treat or education offenders, with a system based on treatment where possible.
In your view, might research in behavioural genetics heighten or reduce discrimination, stereotyping and social discrimination between groups?
The majority of respondents felt that research in behavioural genetics would heighten discrimination, by making stereotyping easier and leading to the creation of a genetic underclass. However, a few people felt that discrimination could be reduced, if better knowledge helped reduce fear and encourage understanding and sympathy. The Institute of Alcohol Studies, for example, suggested that the discovery of a strong genetic contribution to problem drinking could possibly reduce stigma. By giving additional credence to the concept of alcoholism or addiction more generally as a disease, the condition would become less likely to be regarded as selfinflicted and caused by weakness of will or irresponsibility. Several respondents felt that in the short-term discrimination would be heightened, but in the long-term it could be reduced. If differences were shown to be normal and unavoidable, there might be increased tolerance. Social discrimination between groups might also be reduced if research showed how much greater genetic variation is among individuals than among groups. It was also pointed out that it was not the research itself, but the uses to which it was put that would lead to discrimination.
What do you think will be the impact of genetic knowledge about behavioural traits on the individual, on families and on communities?
There was concern that genetic knowledge about behavioural traits could be divisive and cause discrimination. The impact on an individual would depend whether there was a therapy. If there was not a possible treatment, knowledge could lead to individual despondence and hopelessness. Families may be put under pressure to take action and seek a ‘cure’. Communities may be less willing to help those with challenging behaviour that could have been avoided, although there may also be increased sympathy. The importance of genetic counselling and education of the public was emphasised.
How might health professionals, governments, employers, insurers, education authorities and others use genetic information concerning human behaviour?
The hope was expressed that health professionals and others could use genetic information to improve treatment and welfare provision. Educational authorities could use the information either positively or negatively. There could be streaming of children according to their IQ score, discrimination against those disposed towards aggressiveness or low intelligence, or education programmes targeted according to an individual’s genetic potential. The use of genetic information by governments was felt to be a matter of concern, particularly if poor or inconclusive evidence was used. Several respondents were worried that those in a position to misuse information would invade a person’s privacy and discriminate against them. Discrimination by employers was thought to be a particular problem. However, a potential benefit, from the perspective of health and safety, was that some people may be helped by ensuring they would not be placed in environments which would be especially hazardous to them.
There was also concern that insurers would use genetic information to increase discrimination. Respondents from within the insurance industry offered different views as to whether such information would be of use.
Are there any circumstances when such information should be available to third parties either with or without the consent of the individual?
Respondents felt that the only circumstances when such information should be available to third parties would be if it were in the public interest, that is, if it were the case that not to do so could put the individual or other people in danger. It was also felt the information should be available in some criminal cases. However, several respondents added that the information should only be made available to qualified people, and that it must be with the consent of the individual.
How can we ensure that consent to the disclosure of such information is properly informed and freely given?
The use of genetic information was seen to be one of the core issues, and the importance of consent, confidentiality and appropriate use of information were emphasised. Some respondents suggested that stringent new regulation would be necessary while others felt that an extension of the current system for disclosure of medical records could be appropriate. Information should only be disclosed to a third party following proper informed consent from the individual concerned. In any event, there was seen to be a need for high quality behavioural genetic counselling.
Given the complex and sensitive nature of research in behavioural genetics, how can members of the public best be informed about it?
It was felt to be extremely important that the public should be informed as fully as possible, with open and transparent debate. Suggestions as to strategies for achieving this aim included sensitive and intelligent media coverage, responsible television documentaries, a soap opera story line, public posters, citizenship classes in schools, and public debates and discussion meetings. One respondent suggested an official body should be established to ensure media reports are not simplistic and misleading.
Do you think that research in behavioural genetics and genetic tests for behavioural traits might require new codes of practice or new regulatory controls? What in your view should be the nature of such codes of practice or controls?
Most respondents felt that new codes of practice and regulatory controls would be necessary. Several people suggested that a statutory regulatory body, similar to the Human Fertilisation and Embryology Authority, should be established. An alternative was a national ethics committee that would focus specifically on research in behavioural genetics. Others felt that international regulation would also be important, for example through the United Nations. Regulation in this area should be kept under continuous review. Some respondents took the view that current codes might be sufficient.
How much priority would you accord research in behavioural genetics in the competition for necessarily limited research funds?
The majority of respondents felt that research in behavioural genetics should be given low priority. Some specified that research should remain within the public domain, or that environmental factors should be given more priority. Six respondents expressed the view that such research should be given no priority at all, while only one suggested it should be given the highest priority possible. The difficulty of separating out genetic research into normal traits from that into diseases, and the difficulty in separating research into genetic influences from that into environmental influences on behaviour, were highlighted.