Genomics and Justice: Investigating judges’, lawyers’ and non-lawyers’ genetic literacy and views on applications of genomics

Since the arrival of the Genomic Era, we are able to extract from DNA alone increasingly reliable information on human personal characteristics, such as intelligence, academic performance, personality and health. Genetic applications are now relevant to all contexts of life, including medicine (e.g. genomic medicine, pharmacogenomics); lifestyle (e.g. nutrition, partner choice, health-related behaviours, wellbeing); education and career (e.g. personalization, selection); and law and justice (e.g. fairness, praise and punishment; crime prevention). The world has therefore entered an era where, subject to our readiness to adapt to these advances, our own genes can benefit us (individuals and society) more than ever. At the same time, these advances can bring much harm to individuals and societies - especially now that the use of genetic advances is becoming ubiquitous. The pathway from genetic advances to personal positive or negative outcomes can be direct (e.g. disease prevention by means of population wide genetic screening); as well as via mediators and moderators (e.g. genetic literacy, regulation of application of advances, personality characteristics, values, cultural norms etc.). For example, people’s genetic literacy may affect whether they will seek prophylactic genetic testing; and the use of genetic advances will depend on the regulations in place. This means that individuals and societies can control outcomes through mediators and moderators, subject to having the tools to do so (readiness). Readiness for the Genomic Era for individuals means having solid genetic knowledge, as well as attitudes towards the use of genetic advances that are based on accurate knowledge. For societies, readiness requires an additional element - that key stakeholders at the forefront of regulating genetic advances possess multidisciplinary knowledge that combines genetics, law and an understanding of societal implications of genetic advances. As developing genetically literate societies is a slow process, current societies’ readiness depends to a large extent on readiness of key stakeholders, such as teachers, medical practitioners and policy makers. Among the most influential stakeholders at this stage, are those entrusted with decisions on legal questions and disputes, and who play a key role in developing policy and legislation – the judiciary and other lawyers. Their genetic literacy, views and attitudes form the core part of the examination of readiness in this thesis. The thesis brings together work from 5 publications – two reviews and three empirical psychological investigations – forming a comprehensive overview of: genetic advances and the powers they create; the path from these advances and powers to outcomes for individuals and societies; and societies' readiness to control these outcomes. The two reviews analyse the challenges of the three key powers created by genetic advances – power of polygenic prediction, power of environmental engineering and power of genetic engineering. This analysis suggests that these powers present immense opportunities for societies but also many risks; and that developing effective regulation of these powers is an urgent and challenging task for societies. For the three empirical investigations data were collected from 10,373 participants, including samples of Supreme Court judges (N=73), lawyers (N=116; and N= 486), as well as unselected participants from different countries. The data were collected using the International Genetic Literacy and Attitudes Survey (iGLAS) – a validated instrument available in 9 languages. In the studies reported here, data were collected using 25 items for literacy and 51 items for views and attitudes, including on use of genetic data in different contexts, gene editing and regulation of genetic advances. Results from the empirical investigation show that societies are not ready for the Genomic Era. This is true both in terms of low genetic literacy and of many unrealistic views. The results also show that key stakeholders – the judiciary and other lawyers – have uneven genetic knowledge that is not sufficient for ‘judging in the genomic era’. It is primarily poor for questions about the post-genome sequencing findings that cannot be answered by general reasoning. Judges’ and lawyers’ confidence in their genetic knowledge is a poor predictor of their actual knowledge. Significant differences among the groups were found on many issues, both in terms of means (e.g. strength of endorsement) and in terms of variance (e.g. variability in views). For example, judges overall showed stronger agreement (less variability in views) than other lawyers and non-lawyers on how genetic information should be used and by whom, including on controversial matters. The results showed high agreement on some controversial issues among judges and lawyers. For example, most judges and lawyers thought the State should use genetic information on propensity for violence for prevention of crime (e.g. through surveillance). The qualitative analysis uncovered some reasons for and against such use. Similar high endorsement was found for allowing people to opt for gene editing in order to improve themselves/their children. These findings on societal readiness for the Genomic Era call for a number of short- and long-term interventions to regulate the outcomes of advances. For example, providing opportunities for the key stakeholders to gain the genetic literacy required for meaningful assessment of benefits and risks. This need was acknowledged by all of the judges in this research. The final part of this thesis provides an overview of the steps needed for achieving Genomic Era readiness

Justice in the genomic and digital era: a ‘different world’ requiring ‘different law’

Discoveries in the last two decades have created a ‘different world’, which requires ‘different’ laws. They have created a world where: enormous in- formation on people’s past, present and future can be extracted from DNA alone; the DNA of millions of people has already been sequenced; the cost of sequencing is around 30 million times less than in 2003; additional detailed personal information is collected from numerous sources, such as mobile phones, hospitals, bank cards; this information is shared internationally among numerous powerful private and State organisations; and use of this information can be highly profitable for these organisations. Under these conditions, current law is unable to fully protect rights such as that of data protection, privacy, a fair trial, and non-discrimination on genetics and other basis – rights valued by societies. For the law to serve its key purpose, it now must adapt (evolve) to this fast and fundamental change in the ‘environment’. In relation to protection from data misuses, as privacy (genetic and other) is not possible, laws are required which can minimise negative impact of data misuses. Key stakeholders (e.g. judges, policymakers) would need to understand how genes work and how genetic information is used in order to appreciate the urgency of updating laws and to build effective protection

Improving access to justice: community-based solutions

Inaccessibility to justice is a major issue internationally, and in some countries access to justice has decreased in recent years. For example, the growth of inequality and decline of state support have left access to justice in the UK and the US in a worst state in decades. There is therefore an urgent need to find solutions to protect peoples’ rights. This paper outlines key issues of access to justice, and identifies a number of solutions - from grass-root efforts to organizational changes. The paper highlights the importance of community-based solutions, such as mass pro bono contributions from individuals, law service providers and other organizations. It also proposes, as a key solution, making legal professions more representative of societies, and calls for law schools and legal regulators to take the required steps. Another important contributor to improved access to justice is promotion of pro bono work by all lawyers and law organizations at own initiative. The paper also discusses enhancing existing law degrees with additional topics on Access to Justice, to help students gain an objective picture of the realities of the legal system; and on Individual Differences, to benefit from latest interdisciplinary science. Community-based solutions provide stability even in times of difficult economic circumstances and political turbulence, and therefore are relevant to all societies

Designing Post-Genomic Future Together

This publication is a brief communication in response to the UK government report: “Genomics Beyond Healthcare”, which was released on January 26, 2022. We discuss some of the key areas covered by the report, as well as other recent research; and call for interdisciplinary and international collaborations

‘Race’ and other group discrimination in the genomic era

Genetic science has provided new knowledge that has the potential to reduce ‘race’ discrimination. This includes findings that around 95% of human genetic variability is present within any population; and that most human traits are influenced by a complex combination of many genetic and environmental factors. Despite this knowledge, racially discriminatory practices persist internationally, including segregation; unfair sentencing; state surveillance of children; and involuntary sterilisation. Moreover, there is an emerging risk that DNA may be used to propel harmful discriminatory practices. For example, new ‘DNA-based’ groups may emerge in the context of polygenic prediction – aggregating multiple genetic risks into individuals’ combined risk indexes. Such DNA-based groups could be viewed as ‘new races’ - adding yet another category to the already heterogenous definition of ‘race’. This paper reviews the genetic advances directly relevant to, and their impact on, ‘race’ and other group discrimination; and assesses current UK and international discrimination practices and effectiveness of the laws in place prior to and in the genomic era. The paper concludes that current laws provide insufficient protection from ‘race’ and other group discrimination and still reflect people’s beliefs in entrenched differences between ‘races’. The paper asserts that the very use of the term ‘race’ in equality legislation is problematic due to inconsistencies in definition across key legislations; and history of its association with domination. Justice systems must update laws to reflect current genetic knowledge and to address existing and emerging risks of discrimination

Are we ready for the genomic era? Insights from judges and lawyers

Genetic advances have brought new opportunities to society, with new powers of polygenic prediction, genetic engineering and gene-based environmental interventions. Judges and lawyers influence interpretations and attitudes towards complex societal issues and develop regulation. Therefore, their genetic literacy and views are an important part of society’s readiness for the genomic era. The study explored judges’ and lawyers’ (N = 117) genetic literacy, as well as views on the use of genetic advances. Quantitative and qualitative analyses showed insufficient knowledge of essential genetic concepts, including striking cases of over- and under-estimation of genetic and environmental influences on behavior. Participants’ views on every issue were widely varied, from strong agreement to strong disagreement. The majority of the participants thought that current laws are not sufficient to protect individuals from misuses of genetic data. The results suggest that society is not ready for the genomic era and call for multidisciplinary efforts to increase the readiness

Consensus too soon: judges’ and lawyers’ views on genetic information use

Timely effective regulation of genetic advances presents a challenge for justice systems. We used a 51-item battery to examine views on major genetics-related issues of those at the forefront of regulating this area – Supreme Court judges (N = 73). We also compared their views with those of other justice stakeholders (N = 210) from the same country (Romania). Judges showed greater endorsement and less variability in views on the use of genetic data and technologies than the other groups. The agreement among the judges was strikingly strong for some controversial issues, including gene editing; patenting of genetic findings; and the State using genetic information for crime prevention. Judges and other lawyers recognized the need for amending the relevant laws. Without appropriate regulation, genetic science has a risk of propelling inequality rather than fulfilling its promise to improve people’s lives

Effects of Education and Media Framing on Genetic Knowledge and Attitudes

Genetic education is paramount to continued genetic advances, as well as for beneficial use of the outcomes of such advances. However, a large body of literature suggests that the public’s genetic literacy remains inadequate. Previous research has found a positive relationship between educational level and genetic literacy. The current research explores this in 2 samples of UK students: school (A-Level) and undergraduates. A between groups ANOVA revealed a significant difference in genetic literacy scores between the educational levels. The current study further explored genetic literacy of Psychology undergraduates, as psychologists are likely to play a key role in the genomic era, for example contributing to genomic research and providing genetic counselling. Results revealed low genetic literacy in Psychology undergraduate students, highlighting the need for genetic education improvements. To this end, experimental manipulations were conducted to investigate the effects of media framing and feedback on views of genetic determinism and knowledge calibration. A between groups ANOVA showed no significant difference between high and low determinism media framing. The knowledge calibration findings suggested that participants were underconfident in their genetic knowledge. No correlation was found between knowledge and perceived knowledge (confidence) in the group of participants who received feedback. In contrast, a positive correlation between knowledge and confidence was found in the no-feedback condition. Future research is needed to build on these findings

Attitudes towards genetic testing: The role of genetic literacy, motivated cognition, and socio-demographic characteristics

Understanding reasons for why people choose to have or not to have a genetic test is essen tial given the ever-increasing use of genetic technologies in everyday life. The present study explored the multiple drivers of people’s attitudes towards genetic testing. Using the Interna tional Genetic Literacy and Attitudes Survey (iGLAS), we collected data on: (1) willingness to undergo testing; (2) genetic literacy; (3) motivated cognition; and (4) demographic and cultural characteristics. The 37 variables were explored in the largest to-date sample of 4311 participants from diverse demographic and cultural backgrounds. The results showed that 82% of participants were willing to undergo genetic testing for improved treatment; and over 73%—for research. The 35 predictor variables together explained only a small propor tion of variance: 7%—in the willingness to test for Treatment; and 6%—for Research. The strongest predictors of willingness to undergo genetic testing were genetic knowledge and deterministic beliefs. Concerns about data misuse and about finding out unwanted health related information were weakly negatively associated with willingness to undergo genetic testing. We also found some differences in factors linked to attitudes towards genetic testing across the countries included in this study. Our study demonstrates that decision-making regarding genetic testing is influenced by a large number of potentially interacting factors. Further research into these factors may help consumers to make decisions regarding genetic testing that are right for their specific circumstances