In its expansion to genomic, epidemiological and biomedical research, citizen science has been promoted as contributing to the democratisation of medical research and healthcare. At the same time, it has been criticised for reinforcing patterns of exclusion in health and biomedicine, and sometimes even creating new ones. Although citizen science has the potential to make biomedical research more inclusive, the benefits of current citizen science initiatives are not equally accessible for all people—in particular those who are resource-poor, located outside of (...) traditional networks of healthcare services, or members of minorities and marginalised groups. In view of growing public investments in participatory research endeavours, we argue that it should be considered more explicitly if, and how, citizen science could help make research more inclusive, contribute to the public good, and possibly even lead to better and more equitable healthcare. Reflecting on emerging ethical concerns for scientific conduct and best medical practice, we propose a set of relevant considerations for researchers, practitioners, bioethicists, funders and participants who seek to advance ethical practices of citizen-led health initiatives, and address profound differences in position, privilege and power in research. (shrink)

BackgroundFew studies have identified the willingness rate of developing countries population to be enrolled in clinical trials.MethodsAll participants including patients, healthy volunteers and doctors completed a questionnaire to examine factors affecting the consent to participate in medical research.ResultsOverall, 80 % of the included population agree to participate in health research. This rate was lower for trials dealing with life-threatening diseases. Altruism and perceived risk of harm were the main reason to respectively accept or refuse to participate in clinical trials. Factors (...) significantly associated with willingness were: age <40 years 1.6 [95 % Confidence Interval 1.2-2.1]) and prior history of blood donation.ConclusionMost participants expressed their willingness to be included in medical research especially if they are young or if they have history of blood donation. However, consent to participate is low when medical research required acute care. (shrink)

Used wisely the concepts of race and ethnicity in research have great potential, but used unwisely they can do immense damage. We need to consider the potential issues that might require a change of emphasis or application of ethics in a multi-ethnic society. Doing no harm is the most important ethical pillar in the ethnicity and health field. Ethnic differences can be used in damaging ways. Without the ethic of beneficence in place it is better not to draw attention to (...) ethnic differences. Respect is the pre-condition for autonomy. Autonomy of ethnic minority populations to live in their own traditional way is not easy to achieve in multi-ethnic societies. There are difficult issues in multi-ethnic societies that require great sensitivity to create a sense of fairness and justice. Justice is the core value that underpins equity. There is a deep paradox – to promote equality, we may need to treat people and groups unequally. Ethical codes need to be modified to emphasize the importance of including ethnic minority populations in research and not bypassing them, as has been happening. It is correct, for example, that potential research participants' personal details are guarded. If such a person, however, does not read it may be unethical to send written information about a project. It may be more ethical to tele phone or even call at the doorstep of such a person. The history of racism in research is worrying, not least the fear that it might return. We need a governing code of conduct. Ethical research can help ethnic minority groups to move from the shadows of society and participate in a vibrant, healthy, multi-ethnic society. (shrink)

Objective: To explore the experiences of people with a “terminal illness”, focusing on the patients’ perspective of euthanasia and assisted suicide.Method: A qualitative study using narrative interviews was conducted throughout the UK. The views of the 18 people who discussed euthanasia and assisted suicide were explored. These were drawn from a maximum variation sample, who said that they had a “terminal” illness, malignant or non-malignant.Results: That UK law should be changed to allow assisted suicide or voluntary euthanasia was felt strongly (...) by most people. Those who had seen others die were particularly convinced that this should be a right. Some had multiple reasons, including pain and anticipated pain, fear of indignity, loss of control and cognitive impairment. Those who did not want to be a burden also had other reasons for wanting euthanasia. Suicide was contemplated by a few, who would have preferred a change in the law to allow them to end their lives with medical help and in the company of family or friends. The few who opposed a change in UK law, or who felt ambivalent, focused on involuntary euthanasia, cited religious reasons or worried that new legislation might be open to abuse.Conclusion: Qualitative research conducted on people who know they are nearing death is an important addition to the international debate on euthanasia and assisted suicide. Those who had seen others die were particularly convinced that the law should be changed to allow assisted death. (shrink)