Roles and responsibilities in stem cell research: a focus group study with stem cell researchers and patients.

Background: The perspectives of researchers and patients regarding roles and responsibilities in stem cell research are rarely studied, but these could offer insights about responsible research conduct. Method: We have conducted a qualitative study consisting of focus groups with both early- (n = 7) and late-career stem cell researchers (n = 11) that are primarily based in Europe, and with Dutch patients with chronic lower back pain (n = 9). These focus groups have been analyzed thematically. Results: Four themes were identified: 1) roles and responsibilities in the laboratory, 2) responsibilities of and toward patients and the public, 3) the role of regulation and 4) structural hurdles for responsibility. Discussion: The results suggest that responsible research conduct could be improved by addressing grant application procedures, publication pressure and by providing support of dissemination activities for researchers. Conclusion: Responsibility in stem cell research could be enhanced by embracing open science initiatives and targeted training.

What researchers and patients think about roles and responsibilities in stem cell research is not well known, but this information could help to deal with the ethical aspects of stem cell research. We have conducted focus groups with early and late career stem cell researchers based in Europe and with Dutch patients. Four overarching themes were identified: 1) roles and responsibilities in the laboratory, 2) responsibilities of and toward patients and the public, 3) the role of regulation and 4) structural hurdles for responsibility. The results suggest that responsible research conduct could be improved by addressing grant application procedures, publication pressure and by providing support for communicating the progress and results of research. More generally, open science initiatives and targeted training could help to improve dealing with the ethical aspects of stem cell research.

Recognizing the ethical implications of stem cell research: A call for broadening the scope.

The ethical implications of stem cell research are often described in terms of risks, side effects, safety, and therapeutic value, which are examples of so-called hard impacts. Hard impacts are typically measurable and quantifiable. To understand the broader spectrum of ethical implications of stem cell research on science and society, it is equally important to recognize soft impacts. Soft impacts are the effects on behavior, experiences, actions, moral values, and social structures; these are often indirect effects of stem cell research. The combined notions of hard and soft impacts offer a broader way of thinking about the social and ethical implications of stem cell research and can help to steer stem cell research into a sociable desirable direction. Soft impacts enable researchers to become more aware of the broad range of significant implications involved in their work and deserve equal attention for understanding such ethical and societal effects of stem cell research.