Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?

Analyzing genomic data across populations is central to understanding the role of genetic factors in health and disease. Successful data sharing relies on public support, which requires attention to whether people around the world are willing to donate their data that are then subsequently shared with others for research. However, studies of such public perceptions are geographically limited and do not enable comparison. This paper presents results from a very large public survey on attitudes toward genomic data sharing. Data from 36,268 individuals across 22 countries (gathered in 15 languages) are presented. In general, publics across the world do not appear to be aware of, nor familiar with, the concepts of DNA, genetics, and genomics. Willingness to donate one's DNA and health data for research is relatively low, and trust in the process of data's being shared with multiple users (e.g., doctors, researchers, governments) is also low. Participants were most willing to donate DNA or health information for research when the recipient was specified as a medical doctor and least willing to donate when the recipient was a for-profit researcher. Those who were familiar with genetics and who were trusting of the users asking for data were more likely to be willing to donate. However, less than half of participants trusted more than one potential user of data, although this varied across countries. Genetic information was not uniformly seen as different from other forms of health information, but there was an association between seeing genetic information as special in some way compared to other health data and increased willingness to donate. The global perspective provided by our "Your DNA, Your Say" study is valuable for informing the development of international policy and practice for sharing genomic data. It highlights that the research community not only needs to be worthy of trust by the public, but also urgent steps need to be taken to authentically communicate why genomic research is necessary and how data donation, and subsequent sharing, is integral to this.

Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries.

PURPOSE: The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. METHODS: We analyzed the "Your DNA, Your Say" online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle-, and high-income countries, and these were gathered in 15 languages. We analyzed how participants responded when asked whether return of results (RoR) would motivate their decision to donate DNA or health data. We examined variation across the study countries and compared the responses of participants from other countries with those from the United States, which has been the subject of the majority of research on return of genomic results to date. RESULTS: There was substantial variation in the extent to which respondents reported being influenced by RoR. However, only respondents from Russia were more influenced than those from the United States, and respondents from 20 countries had lower odds of being partially or wholly influenced than those from the United States. CONCLUSION: There is substantial international variation in the extent to which the RoR may motivate people's intent to donate DNA or health data. The United States may not be a clear indicator of global attitudes. Participants' preferences for return of genomic results globally should be considered.

Is deception defensible in dementia care? A care ethics perspective.

Deception is common in dementia care, although its moral legitimacy is questionable. This paper conceptually clarifies when does dementia care involve deception and argues that care ethics is an appropriate ethical framework to guide dementia care compared with the mainstream ethical theories that emphasize abilities. From a perspective of care ethics, this paper claims that morally defensible deception is context-specific, embodied as a caring process that needs to be identified through instant, creative and interactive care procedures. According to this argument, it further analyses and concludes the moral rationality of deception in five common cases. While deception is morally justified in many situations, another concern is that it is usually not the last resort but a means of convenience. As the ability to interact, autonomy and dignity of persons with dementia (PWDs) are generally ignored; nurses need more training and education to master the essential procedures to ensure that the value of authenticity and autonomy is maintained and considered throughout dementia care.

Persons with pre-dementia have no Kantian duty to die.

Cooley's argument that persons with pre-dementia have a Kantian duty to die has led to much debate. Cooley gives two reasons for his claim, the first being that a person with pre-dementia should end his/her life when he/she will inevitably and irreversibly lose rationality and be unable to live morally as a result. This paper argues that this reason derives from an unsubstantiated premise and general confusion regarding the condition for a Kantian duty to die. Rather, a close reading of Kant reveals that such a condition occurs when a person confronts an external handicap that does not undermine his/her rational ability but deprives him/her of the possibility of living the way a person should. People do not confront this experience with progressive dementia. The other reason Cooley proposes is that a person should not allow their continued existence to become a burden to others. This claim partly stems from a radical interpretation of a case discussed by Kant and is partly based on a misuse of Kant's formulation of humanity. Based on a prudent inference from Kantian ethics, this article argues against Cooley that persons with pre-dementia have no Kantian duty to die.

Medical ethics education in China: Lessons from three schools.

BACKGROUND: Ethics teaching is a relatively new area of medical education in China, with ethics curricula at different levels of development. This study examined ethics education at three medical schools in China to understand their curricular content, teaching and learning methods, forms of assessments, changes over time, and what changes are needed for further improvement. METHODS: We used student and faculty surveys to obtain information about the ethics courses' content, teaching methods, and revisions over time. The surveys also included five realistic cases and asked participants whether each would be appropriate to use for discussion in ethics courses. Students rated the cases on a scale and gave written comments. Finally, participants were asked to indicate how much they would agree with the statement that medical professionalism is about putting the interests of patients and society above one's own. RESULTS: There were both similarities and differences among these schools with regard to course topics, teaching and assessment methods, and course faculty compositions, suggesting their courses are at different levels of development. Areas of improvement for the schools' courses were identified based on this study's findings and available literature. A model of the evolution of medical ethics education in China was proposed to guide reform in medical ethics instruction in China. Analysis identified characteristics of appropriate cases and participants' attitudes toward the ideal of professionalism. DISCUSSION: We conclude that the development of medical ethics education in China is promising while much improvement is needed. In addition, ethics education is not confined to the walls of medical schools; the society at large can have significant influence on the formation of students' professional values.

Medical professionalism in China and the United States: a transcultural interpretation.

As in other societies, medical professionalism in the Peoples' Republic of China has been rapidly evolving. One of the major events in this process was the endorsement in 2005 of the document, "Medical Professionalism in the New Millennium: A Physician Charter," by the Chinese Medical Doctor Association (hereafter, the Charter)(1). More recently, a national survey, the first on such a large scale, was conducted on Chinese physicians' attitudes toward the fundamental principles and core commitments put forward in the Charter. Based on empirical findings from that study and comparing them to the published results of a similar American survey, the authors offer an in-depth interpretation of significant cross-cultural differences and important transcultural commonalities. The broader historical, socio-economic, and ethical issues relating to salient Chinese cultural practices such as family consent, familism (the custom of deferring decisions to family members), and the withholding of medical information, as well as controversial topics such as not respecting patients' autonomy, are examined. The Chinese Survey found that Chinese physicians supported the principles of the Charter in general. Here we argue that Chinese culture and traditional medical ethics are broadly compatible with the moral commitments demanded by modern medical professionalism. Methodologically and theoretically-recognizing the problems inherent in the hoary but still popular habit of dichotomizing cultures and in relativism-a transcultural approach is adopted that gives greater (due) weight to the internal moral diversity present within every culture, the common ground shared by different cultures, and the primacy of morality. Genuine cross-cultural dialogue, including a constructive Chinese-American dialogue in the area of medical professionalism, is not only possible, but necessary.

The Duty to Care is Not Dead Yet.

The COVID-19 pandemic exposed social shortcomings and ethical failures, but it also revealed strengths and successes. In this perspective article, we examine and discuss one strength: the duty to care. We understand this duty in a broad sense, as more than a duty to treat individual patients who could infect health care workers. We understand it as a prima facie duty to work to provide care and promote health in the face of risks, obstacles, and inconveniences. Although at least one survey suggested that health care workers would not respond to a SARS-like outbreak according to a duty to care, we give reasons to show that the response was better than expected. The reasons we discuss lead us to consider normative accounts of the duty to care based on the adoption of social roles. Then, we consider one view of the relationship between empirical claims and normative claims about the duty to care in the COVID-19 pandemic. Here, we draw insight from Mengzi, with an emendation from Dewey. Our perspective leaves many question to research, but one point seems clear: there will be future pandemics and the need for health care workers who respond.

Key elements and checklist of shared decision-making conversation on life-sustaining treatment in emergency: a multispecialty study from China.

BACKGROUND: Shared decision-making (SDM) has broad application in emergencies. Most published studies have focused on SDM for a certain disease or expert opinions on future research gaps without revealing the full picture or detailed guidance for clinical practice. This study is to investigate the optimal application of SDM to guide life-sustaining treatment (LST) in emergencies. METHODS: This study was a prospective two-round Delphi consensus-seeking survey among multiple stakeholders at the China Consortium of Elite Teaching Hospitals for Residency Education. Participants were identified based on their expertise in medicine, law, administration, medical education, or patient advocacy. All individual items and questions in the questionnaire were scored using a 5-point Likert scale, with responses ranging from "very unimportant" (a score of 1) to "extremely important" (a score of 5). The percentages of the responses that had scores of 4-5 on the 5-point Likert scale were calculated. A Kendall's W coefficient was calculated to evaluate the consensus of experts. RESULTS: A two-level framework consisting of 4 domains and 22 items as well as a ready-to-use checklist for the informed consent process for LST was established. An acceptable Kendall's W coefficient was achieved. CONCLUSION: A consensus-based framework supporting SDM during LST in an emergency department can inform the implementation of guidelines for clinical interventions, research studies, medical education, and policy initiatives.

Rethinking the Precedent Autonomy, Current Minimal Autonomy, and Current Well-Being in Medical Decisions for Persons with Dementia.

As patient autonomy expands, a highly controversial issue has emerged. Should the advance directives (ADs) of refusing life-saving treatments or requesting euthanasia of persons with dementia (PWDs) who express changed minds or are often in a happy state be fulfilled? There are two autonomy-related positions. The mainstream position in philosophical discussions supports the priority of ADs based on precedent autonomy. Buchanan and Brock, and Dworkin represent this view. The other position supports the priority of PWDs' current wishes based on minimal autonomy represented by Jaworska. By rethinking the theoretical and practical challenges of the two positions and their arguments respectively, the paper concludes that in such a scenario, the priority of ADs is morally indefensible, and it is also challenging to establish minimal autonomy defend the moral priority of PWDs' current wishes. For PWDs whose past values, beliefs, and preferences fade away but who retain apparent intrinsic sentience of well-being, a modified defined quality-of-life (QoL) approach serves as another reasonable basis in their medical decision-making, and the ADs and the QoL should be further merged to reduce the uncertainty of the grey zone.

Research under China's personal information law.

The new law may present obstacles to some kinds of research.

Ethical Perspectives of Chinese and United States Physicians at Initiation of a Research Collaborative.

Variances in perceived standards regarding research integrity appear to exist between China and the U.S. An established joint institute for translational and clinical research between one Chinese and one U.S. health system provides a valuable venue in which to evaluate these perceptions better. We therefore undertook a survey of 209 physicians at the two institutions in 2013-14. The vast majority of physicians from both institutions understood the necessity of obtaining informed consent from research participants, the need to provide a description of the risks of participation, and the voluntary nature of research participation. However, there were differences in responses between the two sites in willingness to report plagiarism (U.S. 95.65% vs. Chinese 40.21%; p < .0001) and data falsification (U.S. 100% vs. Chinese 81.25%; p < .0001) and in willingness to attend biomedical industry-funded promotional events (U.S. 11.0% vs. Chinese 74.0%; p < .0001). When planning to conduct collaborative clinical research across cultures, particularly when uncertainty regarding the similarity of research cultures exists, exploration of cultural and ethical norms in research may be informative regarding educational needs and the risks of research and academic misconduct.

The need for a standard for informed consent for collection of human fetal material.

The ISSCR has developed the Informed Consent Standards for Human Fetal Tissue Donation and Research to promote uniformity and transparency in tissue donation and collection. This standard is designed to assist those working with and overseeing the regulation of such tissue and reassure the wider community and public.

A Systematic Literature Review of Ethical Challenges Related to Medical and Public Health Data Sharing in China.

Although stakeholders in China have begun promoting medical and public health data sharing, a large portion of data cannot flow freely across research teams and borders and be converted into "big data." To identify the ethical challenges that are considered to hinder medical and public health data sharing, we performed a systematic literature review pertaining to medical and health data sharing in China. A total of 2959 unique records were retrieved through the database search, 61 of which were included in the final synthesis after full-text screening. This review provides an overview of the current ethical challenges and barriers involved in data sharing for healthcare purposes in China. Through the systematic review of evidence from peer-reviewed literature and dissertations, we identified barriers and ethical challenges grouped in a taxonomy of capacity building needs, balancing different stakeholders' interests, scientific and social value, and the data subjects' rights, public trust and engagement. Best practices and educational implications were suggested based on our findings.

Regional Differences Among Bone Marrow Registrants: The Results of a Cross-Sectional Telephone-Based Survey.

INTRODUCTION: In the most western and northeastern provincial branches of China where ethnic minorities reside the registry sizes are compatibly small. Our goal was to address the following questions: 1. Do registrants in the 4 regions differ across 4 categories of characteristics associated with decisions to proceed with bone marrow donation? 2. What are the differences in their motivation to attend the CMDP (China Marrow Donor Program)? 3. What possible suggestions could this study supply for the recruitment work of these 4 regions in the future? MATERIAL AND METHOD: A random sampling procedure was conducted to include 2% of 229,204 newly registered potential bone marrow donors. Participants were contacted to complete a 30-minute structured telephone review. RESULT: There is a statistically significant effect of region on the causes of donor attrition. For both the opted-out group and ambivalent group of western region registrants, the knowledge (were not fully informed when enrolled) reason was significantly higher than in the other 3 regions. None of the northeast registrants chose "health" as a reason for their ambivalence, in contrast, east registrants had a significantly higher proportion to worry about their health status was not suitable for donation. DISCUSSION: The results illustrate that in China at least, the mode of registration differs according to the region, which can guide the registry in their retention strategy. The western regions are more likely to be affected by people around and hope to be contacted regularly to confirm the willingness of donation. Interventions that encouraged bone marrow donors to share their experience in their communities might in turn foster an enhanced registration rate. The northeastern regions were more likely to be affected by the newspaper so the media propaganda will be useful for donor recursion. They were also more likely to have questions about the knowledge of bone marrow donation. Continual communication will help registrants secure information to retain favorable beliefs about donation.

ISSCR guidelines for the transfer of human pluripotent stem cells and their direct derivatives into animal hosts.

The newly revised 2021 ISSCR Guidelines for Stem Cell Research and Clinical Translation includes scientific and ethical guidance for the transfer of human pluripotent stem cells and their direct derivatives into animal models. In this white paper, the ISSCR subcommittee that drafted these guidelines for research involving the use of nonhuman embryos and postnatal animals explains and summarizes their recommendations.

Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries.

BACKGROUND: Public trust is central to the collection of genomic and health data and the sustainability of genomic research. To merit trust, those involved in collecting and sharing data need to demonstrate they are trustworthy. However, it is unclear what measures are most likely to demonstrate this. METHODS: We analyse the 'Your DNA, Your Say' online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle- and high-income countries, gathered in 15 languages. We examine how participants perceived the relative value of measures to demonstrate the trustworthiness of those using donated DNA and/or medical information. We examine between-country variation and present a consolidated ranking of measures. RESULTS: Providing transparent information about who will benefit from data access was the most important measure to increase trust, endorsed by more than 50% of participants across 20 of 22 countries. It was followed by the option to withdraw data and transparency about who is using data and why. Variation was found for the importance of measures, notably information about sanctions for misuse of data-endorsed by 5% in India but almost 60% in Japan. A clustering analysis suggests alignment between some countries in the assessment of specific measures, such as the UK and Canada, Spain and Mexico and Portugal and Brazil. China and Russia are less closely aligned with other countries in terms of the value of the measures presented. CONCLUSIONS: Our findings highlight the importance of transparency about data use and about the goals and potential benefits associated with data sharing, including to whom such benefits accrue. They show that members of the public value knowing what benefits accrue from the use of data. The study highlights the importance of locally sensitive measures to increase trust as genomic data sharing continues globally.