Population Preferences for Performance and Explainability of Artificial Intelligence in Health Care: Choice-Based Conjoint Survey.

BACKGROUND: Certain types of artificial intelligence (AI), that is, deep learning models, can outperform health care professionals in particular domains. Such models hold considerable promise for improved diagnostics, treatment, and prevention, as well as more cost-efficient health care. They are, however, opaque in the sense that their exact reasoning cannot be fully explicated. Different stakeholders have emphasized the importance of the transparency/explainability of AI decision making. Transparency/explainability may come at the cost of performance. There is need for a public policy regulating the use of AI in health care that balances the societal interests in high performance as well as in transparency/explainability. A public policy should consider the wider public's interests in such features of AI. OBJECTIVE: This study elicited the public's preferences for the performance and explainability of AI decision making in health care and determined whether these preferences depend on respondent characteristics, including trust in health and technology and fears and hopes regarding AI. METHODS: We conducted a choice-based conjoint survey of public preferences for attributes of AI decision making in health care in a representative sample of the adult Danish population. Initial focus group interviews yielded 6 attributes playing a role in the respondents' views on the use of AI decision support in health care: (1) type of AI decision, (2) level of explanation, (3) performance/accuracy, (4) responsibility for the final decision, (5) possibility of discrimination, and (6) severity of the disease to which the AI is applied. In total, 100 unique choice sets were developed using fractional factorial design. In a 12-task survey, respondents were asked about their preference for AI system use in hospitals in relation to 3 different scenarios. RESULTS: Of the 1678 potential respondents, 1027 (61.2%) participated. The respondents consider the physician having the final responsibility for treatment decisions the most important attribute, with 46.8% of the total weight of attributes, followed by explainability of the decision (27.3%) and whether the system has been tested for discrimination (14.8%). Other factors, such as gender, age, level of education, whether respondents live rurally or in towns, respondents' trust in health and technology, and respondents' fears and hopes regarding AI, do not play a significant role in the majority of cases. CONCLUSIONS: The 3 factors that are most important to the public are, in descending order of importance, (1) that physicians are ultimately responsible for diagnostics and treatment planning, (2) that the AI decision support is explainable, and (3) that the AI system has been tested for discrimination. Public policy on AI system use in health care should give priority to such AI system use and ensure that patients are provided with information.

Attitudes Toward Psychiatric Genetic Testing and Research: A Comparative Study Between Denmark and Cuba.

Introduction: Psychiatric genetic research has seen progress in identifying genetic risk variants associated with major mental disorders. Testing with preventive purposes is likely to be offered to high-risk individuals in the near future. It is important that genetic testing and counseling align with the interests of the patients, and these interests are likely to vary among countries and cultures. Aim: The present study aimed to compare the attitudes toward psychiatric genetic research and genetic testing in Denmark and Cuba. Materials and Methods: A survey, culturally adapted for each country, was administered to a pool of students, patients with depression, and the closest relatives of these patients. A total of 491 stakeholders from Denmark and 720 from Cuba were included in the study. Results: Significant differences between the two populations were found for general knowledge about psychiatric genetic research, whom to offer genetic testing, and to whom to entrust with psychiatric genetic information. Cuban stakeholders were more likely to feel uncomfortable about psychiatric genetic research than the Danish stakeholders. This difference might be driven by the characteristics of the health systems, sociocultural factors, and lower genetic literacy in the Cuban population. Conclusion: This study is the first to compare attitudes toward psychiatric genetic testing between a Latin American country and a Nordic country. The results reported could be valuable when designing general guidelines for psychiatric genetic testing in the future.

The preferences of potential stakeholders in psychiatric genomic research regarding consent procedures and information delivery.

BACKGROUND: Genomic sequencing plays an increasing role in genetic research, also in psychiatry. This raises challenges concerning the validity and type of the informed consent and the return of incidental findings. However, no solution currently exists on the best way to obtain the informed consent and deliver findings to research subjects. AIMS: This study aims to explore the attitudes among potential stakeholders in psychiatric genomic research toward the consenting procedure and the delivery of incidental findings. METHODS: We developed a cross-sectional web-based survey among five groups of stakeholders. A total of 2637 stakeholders responded: 241 persons with a mental disorder, 671 relatives, 1623 blood donors, 74 psychiatrists, and 28 clinical geneticists. RESULTS: The stakeholders wanted active involvement as 92.7% preferred a specific consent and 85.1% wanted to receive information through a dynamic consent procedure. The majority of stakeholders preferred to receive genomic information related to serious or life-threatening health conditions through direct contact (69.5%) with a health professional, i.e. face-to-face consultation or telephone consultation (82.4%). Persons with mental disorders and relatives did not differ in their attitudes from the other stakeholder groups. CONCLUSION: The findings illustrate that the stakeholders want to be more actively involved and consider consent as a reciprocal transaction between the involved subjects and the researchers in the project. The results highlight the importance of collaboration between researchers and clinical geneticists as the latter are trained, through their education and clinical experience, to return and explain genomic data to patients, relatives, and research subjects.

Attitudes of stakeholders in psychiatry towards the inclusion of children in genomic research.

BACKGROUND: Genomic sequencing of children in research raises complex ethical issues. This study aims to gain more knowledge on the attitudes towards the inclusion of children as research subjects in genomic research and towards the disclosure of pertinent and incidental findings to the parents and the child. METHODS: Qualitative data were collected from interviews with a wide range of informants: experts engaged in genomic research, clinical geneticists, persons with mental disorders, relatives, and blood donors. Quantitative data were collected from a cross-sectional web-based survey among 1227 parents and 1406 non-parents who were potential stakeholders in psychiatric genomic research. RESULTS: Participants generally expressed positive views on children's participation in genomic research. The informants in the qualitative interviews highlighted the age of the child as a critical aspect when disclosing genetic information. Other important aspects were the child's right to an autonomous choice, the emotional burden of knowing imposed on both the child and the parents, and the possibility of receiving beneficial clinical information regarding the future health of the child. Nevertheless, there was no consensus whether the parent or the child should receive the findings. A majority of survey stakeholders agreed that children should be able to participate in genomic research. The majority agreed that both pertinent and incidental findings should be returned to the parents and to the child when of legal age. Having children does not affect the stakeholder's attitudes towards the inclusion of children as research subjects in genomic research. CONCLUSION: Our findings illustrate that both the child's right to autonomy and the parents' interest to be informed are important factors that are found valuable by the participants. In future guidelines governing children as subjects in genomic research, it would thus be essential to incorporate the child's right to an open future, including the right to receive information on adult-onset genetic disorders.

Stakeholders in psychiatry and their attitudes toward receiving pertinent and incident findings in genomic research.

Increasingly more psychiatric research studies use whole genome sequencing or whole exome sequencing. Consequently, researchers face difficult questions, such as which genomic findings to return to research participants and how. This study aims to gain more knowledge on the attitudes among potential research participants and health professionals toward receiving pertinent and incidental findings. A cross-sectional online survey was developed to investigate the attitudes among research participants toward receiving genomic findings. A total of 2,637 stakeholders responded: 241 persons with mental disorders, 671 relatives, 1,623 blood donors, 74 psychiatrists, and 28 clinical geneticists. Stakeholders wanted both pertinent findings (95%) and incidental findings (91%) to be made available for research participants. The majority (77%) stated that researchers should not actively search for incidental findings. Persons with mental disorders and relatives were generally more positive about receiving any kind of findings than clinical geneticists and psychiatrists. Compared with blood donors, persons with mental disorders reported to be more positive about receiving raw genomic data and information that is not of serious health importance. Psychiatrists and clinical geneticists were less positive about receiving genomic findings compared with blood donors. The attitudes toward receiving findings were very positive. Stakeholders were willing to refrain from receiving incidental information if it could compromise the research. Our results suggest that research participants consider themselves as altruistic participants. This study offers valuable insight, which may inform future programs aiming to develop new strategies to target issues relating to the return of findings in genomic research.

Socio-demographic characteristics of Danish blood donors.

BACKGROUND: Blood transfusion is an essential component of a modern healthcare system. Because knowledge about blood donor demography may inform the design of strategies for donor recruitment and retention, we used nationwide registers to characterize the entire population of blood donors in Denmark in 2010. METHODS: The study population comprised all Danes in the age range eligible for blood donation (N = 3,236,753) at the end of 2010. From the Scandinavian Donations and Transfusions (SCANDAT) register, we identified 174,523 persons who donated blood in Danish blood banks at least once in 2010. The association between sociodemographic characteristics and blood donor prevalence was examined using regression models. RESULTS: The overall prevalence of blood donation was 5.4% among both women and men. The age-specific prevalence of blood donation peaked at 25 years of age (6.8%) for women and 30 years of age (5.7%) for men. Children of any age were associated with lower prevalence of blood donation among women, while the opposite was seen for men. Middle to high income groups, but not the highest income group, had fourfold higher donor prevalence than the lowest income group (6.7% compared to 1.7%). The prevalence of blood donation was considerably lower among men living with their parents (2.9%) or alone (3.9%) than among men cohabitating with a woman (6.2%). SUMMARY: Social marginalization, as indicated by low income and being a male living without a woman, was associated with lower prevalence of blood donation. However, individuals with very high incomes and women with children were underrepresented in the Danish blood donor population.