Ethical Concerns Surrounding Genetic Research.pdf

Ethical Concerns Surrounding Genetic Research 11 December 2023 15:03 Main Ideas Notes Concerns on behavioral genetic research Notes Nuffield Report ○ This report examines the ethical, legal and social issues that arise from behavioural genetic research on ‘normal’ behaviour, as opposed to diseases a...

Ethical Concerns Surrounding Genetic Research 11 December 2023 15:03 Main Ideas Notes Concerns on behavioral genetic research Notes Nuffield Report ○ This report examines the ethical, legal and social issues that arise from behavioural genetic research on ‘normal’ behaviour, as opposed to diseases and disorders Concern: Determinism ○ People are concerned about genetic findings as they worry that this will lead to 'blaming biology' What we know: ○ Genetic risk is probabilistic ▪ Even the course of single gene disorders (e.g. PKU) can be altered ○ But the data are not always presented in a way that emphasises this point Historical context Eugenics ○ Idea that humanity can be improved using selective breeding ○ Movement is linked to the establishment of behavioural as a field Effects of eugenics Why eugenics is so problematic? ○ Fails to acknowledge the pluralism of values and is overly optimistic about our stats as 'designers' ▪ Eugenics is often based on a limited number of people’s beliefs and attitudes about ‘better people’, as well as limited and biased data ▪ Selecting for one trait may reduce fitness in other areas ▪ Also, how confident are we about our ‘genetic screens’? ○ Violation of reproductive freedoms ▪ has occurred in the past and is still occurring (e.g. in some countries transitioning is conditional on giving up on reproductive rights) ○ Engaging in eugenics without knowing? ▪ Screening for single gene disorders in couples considering starting a family Should current behavioural genetics research be stopped because of past eugenics policies ○ Even if we manage to conduct an objective study, we cannot guarantee that the findings are presented in a neutral way ○ Importance of ethical oversight in research ○ Importance of responsible science communication Importance of ethical oversight Important questions: ○ What research questions are asked and why ○ Who conducts research? ○ Is funding fairly distributed? ○ Does everyone have an equal opportunity to pursue an academic career? ○ Who is the focus of research? ○ And in what context? Summary Like in almost any area of research on humans, there are real ethical concerns regarding genetic research Some of these concerns are about the ‘fear of the unknown’ Some concerns are about potential misapplication of the findings: ○ Applying a biased interpretation of scientific findings to advance political agenda ○ Misunderstanding (e.g. misinterpretation of statistics as applying to individuals rather than populations) Ethical oversight is critical to protect individuals and in doing so, hopefully help society Ethical considerations should be re-evaluated as our knowledge about genetic and environmental influences increases Research in genetics attracts considerable media attention both scientists and journalists have a duty to communicate findings in a responsible manner (avoid headlines like: “A gene for X”) Need for diversity! ○ In researchers ○ In participants ○ In research questions ○ Need rigour and replication! ○ Robust findings before policy Need engagement between researchers, policy makers, media, and people with lived experience! PSYC0036 Genes and Behaviour Page 1 Biological propensity can also be viewed positively ○ Example: Genetic variants in non-heterosexual population ▪ found more open-to-experience genetic influences Concern: changing traits ○ If possible to identify genes that influence behaviour, people may use this information to try to pre -emptively modify people’s behaviour ▪ Bad thing? ▪ Can be justified? how should interventions be administered in this context ○ Worries about gene therapies, and over medicalisation ▪ Gene therapy for complex multifactorial traits not advocated by anyone who is up to date on research ▪ Over medicalisation should be guarded against □ But developing e.g. pharmacogenetic approaches can help ensure that only those who benefit from a medicine receive it Concern: pre-natal selection ○ Techniques: ▪ Prenatal diagnosis (PND) ▪ Preimplantation genetic diagnosis (PGD ○ Most ethicists take a view that: ▪ Defensible for serious diseases (certainty) ▪ Not defensible for traits in the normal range e.g. intelligence, sexuality, neurodiversity (probability) ○ Selecting a mate/donor qualify as pre-natal selection? Concern: legal implications ○ Genetic information as an excuse? ○ Genetic information used to restrict freedoms pre-emptively ○ Legal system is based on the idea that a person is answerable for their actions and can be held responsible for a crime. ▪ Some exceptions, including diminished responsibility due to a mental disorder. ○ Genetic information should not challenge our notions of legal responsibility (genes are not deterministic) ○ Case study: Stephen Mobley ▪ the most widely reported case where lawyers attempted to use genetics as a defence requested that he be tested for ‘genetic abnormality’ in MAOA gene - argued, that it may explain his actions ○ Science and law have different goals ○ The legal system considers the probability of a given individual’s guilt and the likelihood of re -offence ▪ Current genetic studies focused on explaining variation in the population, not on computing the odds of past or future offending for a single individual ○ Common source of misunderstanding of genetics (and population statistics in general) ▪ using population data to make recommendations for a single individual ▪ A single gene (or even a constellation of many genes) is not sufficient to cause a complex behavioural outcome ▪ Even in areas of medicine where there are ‘more robust’ genetic findings – e.g. rheumatoid arthritis – genetic information is combined with information about a person’s past behaviour to predict risk of poor outcome (Scott et al., 2013) Notes ▪ not yet practicable to use information about a person’s genetic make-up in sentencing decisions ▪ Currently judges consider: □ Environmental factors □ Social factors □ Psychiatric factors ○ Bottom line ▪ If consistent and replicable genetic findings accumulate: □ Would need to demonstrate that genetic information predicts likelihood of offending over and above information gained by other well established risk factors, such as prior history ▪ Genetic risk embedded in these factors - not sure how much using a polygenic risk score would add □ May in the future be helpful in guiding therapeutic offering? Concern: Employment Employers already use psychometric tests (e.g. IQ and personality) ○ These tests are very far from fool proof and the research that ‘validates’ their use is not always well conducted; i.e. ethical considerations are real regardless of whether we use DNA or other measures Concern: Education Children are already classified on reading ability/IQ, e.g. setting and streaming at schools Could genetic information be used to personalise education? - maybe, but not on current knowledge Concern: Insurance Insurers might want to use genetic information to estimate risk (e.g. aggression, novelty seeking) ○ genetic tests are unreliable predictors of behaviour at the individual level and the environment is also important Vulnerable groups may be excluded from obtaining insurance ○ This concern is not limited to misuse of genetic information. ○ Some insurance companies already screen people using psychometric tests that e.g. yield impulsivity scores Personal genetic profiling Several companies offer personal genetic profiling services for disease susceptibility Positives: ○ tests might provide reassurance or enable people to take preventative action Negatives: ○ Test results can be difficult to interpret; people are notoriously poor at interpreting risk statistics. ○ ‘Good’ results may lead to complacency in lifestyle. ○ Learning about risk of disease could be upsetting, particularly if no treatments are available. ○ There is potential for misuse of personal genetic information. ○ People may seek unnecessary further tests or advice from their doctor PSYC0036 Genes and Behaviour Page 2