scholarly journals Ethical Issues in Research Processes: Informed Consent, the Role of the Researcher, Access to Research Sites and Research Subjects

Author(s):  
Lina Zhang ◽  
Zhiqing Liu
PLoS ONE ◽  
2020 ◽  
Vol 15 (11) ◽  
pp. e0242828
Author(s):  
Signe Mezinska ◽  
Jekaterina Kaleja ◽  
Ilze Mileiko

Relational aspects, such as involvement of donor’s relatives or friends in the decision-making on participation in a research biobank, providing relatives’ health data to researchers, or sharing research findings with relatives should be considered when reflecting on ethical aspects of research biobanks. The aim of this paper is to explore what the role of donor’s relatives and friends is in the process of becoming and being a biobank donor and which ethical issues arise in this context. We performed qualitative analysis of 40 qualitative semi-structured interviews with biobank donors and researchers. The results show that relatedness to relatives or other types of close relationships played a significant role in the donors’ motivation to be involved in a biobank, risk-benefit assessment, and decisions on sharing information on research and its results. Interviewees mentioned ethical issues in the context of sharing relatives’ health-related data for research purposes and returning research findings that may affect their relatives. We conclude that the question of what information on family members may be shared with a biobank by research participants without informed consent of those relatives, and when family members become research subjects, lacks a clear answer and detailed guidelines, especially in the context of the introduction of the European Union’s (EU) General Data Protection Regulation. Researchers in Latvia and EU face ethical questions and dilemmas about returning research results and incidental findings to donors’ relatives, and donors need more information on sharing research results with relatives in the informed consent process.


Author(s):  
Sana Loue

The strengths-based approach to the provision of social work services is said to rest on a respect for the worth and dignity of every individual and a concern that every individual be able to fulfill his or her potential. The strengths perspective transforms the role of the social worker role from that of an authority to that of a collaborator and seeks to facilitate client identification of internal and external strengths and resources and delineation of goals. Numerous criticisms have been raised about the approach, which has not been standardized in practice and has not been systematically evaluated through rigorous research to ascertain the effects of the approach or its acceptability to clients. As a consequence, numerous ethical issues are raised, including questions relating to client self-determination and informed consent. Additional research is needed to further evaluate the value of this perspective to client growth and development.


2005 ◽  
Vol 50 (9) ◽  
pp. 534-540 ◽  
Author(s):  
Debbie Schachter ◽  
Irwin Kleinman ◽  
William Harvey

Objective: To explore the doctrine of informed consent and the development of capacity in adolescents with psychiatric problems to help clinicians better reflect on the relevant ethical issues. Method: We discuss the relevant literature and explore the role of psychiatric impairment in adolescents' ability to consent. Results: In common law, there is no minimum age at which individuals are able to consent to medical treatment and no age below which they are unable to consent. Adolescents' right to self-determination is based on their ability to understand and appreciate the information relevant to the medical decision and on their ability to consent voluntarily and freely. There is a consensus in the literature that, around age 14 years, adolescents have the cognitive ability to understand information necessary for consent. However, there are limited empirical data regarding adolescents' ability to appreciate the information and to make a voluntary decision. Conclusion: Clinicians need to involve adolescents in the consent process to the extent possible and assess the elements of capacity to consent to treatment on an individual case basis, recognizing that capacity may evolve as adolescents' cognitive capacities and values mature.


Author(s):  
Christian B. Ramers

Describe the essential components of the ethical conduct of research, the role of the institutional review board, the process of informed consent, the potential areas of conflict of interest for clinicians participating in research, and other ethical issues related to research in HIV medicine.


1995 ◽  
Vol 2 (3) ◽  
pp. 223-232 ◽  
Author(s):  
Immy Holloway ◽  
Stephanie Wheeler

This article is concerned with ethical issues that have to be considered when under taking qualitative research. Some of the issues - such as informed consent, the dignity and privacy of the research subjects, voluntary participation and protection from harm - are the same as in other types of research and have their basis in moral and ethical principles. Qualitative research, however, generates specific ethical problems because of the close relationship that researchers form with participants. Qualitative research with patients is especially difficult because of their vulnerability and lack of power in the clinical situation. Therefore the potential conflict between the dual role of the nurse - the professional and the research roles - has to be solved. Researchers also learn how to cope with the tension of subjective and objective elements of the research. Nurses who attempt qualitative research have to consider a variety of complex ethical issues, which are addressed in this paper.


Author(s):  
Robert J. Barnet

It is important to recognize that the four “p”s - power, position, prestige and profit - too frequently drive science, business, academia, and the professions. This chapter is concerned with the importance of appropriate consent, the just distribution of the material benefits of scientific research, and the possible exploitation of research subjects. Informed consent and social consensus may not adequately address the related ethical issues involved in biobanking and other related research. Past experiences internationally, especially among the marginalized, are reviewed. The chapter explores whether benefits that accrue to those involved in research, and even the larger community, can rely on the concept of social consensus. Is there sufficient attention to transparency and adequate consideration of present and future harms and benefits to research subjects, their descendants and the broader community? Are conflicts of interest, real and potential, adequately acknowledged and addressed?


2009 ◽  
Vol 14 (1) ◽  
pp. 36-50
Author(s):  
Leonard F. Vernon ◽  
Christopher Kent

This article traces the historical and philosophical roots of the provaccination and anti-vaccination movements through to the present day, with a focus on the role of chiropractic within those movements. Political, legal, and scientific issues are considered. Attempts to portray the anti-vaccination chiropractors as unscientific extremists, by both orthodox medicine and from within the chiropractic community itself, clouds the informed consent and freedom of choice aspect relating to health care that they espouse, and scapegoats the so-called extremists rather than facing the ethical issues surrounding fully informed consent. The authors conclude that would-be medical ethicists promote their own political agendas that aid profit before safety and breed distrust within the community that is meant to be served in a balanced and ethical manner.


Author(s):  
Rachel Glennerster ◽  
Shawn Powers

The increasing use of randomized evaluations in economics has brought an increase in discussion about ethical issues. We argue that while there are ethical issues specific to randomization, most important ethical challenges are not unique to this methodology. The rise in direct researcher involvement with antipoverty programs that has accompanied the rise in randomized evaluations has made ethics issues more salient and raised complex regulatory questions. Though the principles of respect for persons, justice, and beneficence outlined by the 1978 Belmont Report continue to provide a useful ethical framework, we note a number of challenging tradeoffs in applying them including those around data confidentiality, informed consent, and misleading research subjects. We conclude by discussing how ethical guidelines are applied in practice, noting a number of gaps, ambiguities, and areas where we believe practice is diverging from the underlying principles. These issues apply with equal force to all empirical methodologies.


Mousaion ◽  
2016 ◽  
Vol 33 (1) ◽  
pp. 23-42 ◽  
Author(s):  
Tinashe Mugwisi

Information and communications technologies (ICTs) and the Internet have to a large extent influenced the way information is made available, published and accessed. More information is being produced too frequently and information users now require certain skills to sift through this multitude in order to identify what is appropriate for their purposes. Computer and information skills have become a necessity for all academic programmes. As libraries subscribe to databases and other peer-reviewed content (print and electronic), it is important that users are also made aware of such sources and their importance. The purpose of this study was to examine the teaching of information literacy (IL) in universities in Zimbabwe and South Africa, and the role played by librarians in creating information literate graduates. This was done by examining whether such IL programmes were prioritised, their content and how frequently they were reviewed. An electronic questionnaire was distributed to 12 university libraries in Zimbabwe and 21 in South Africa. A total of 25 questionnaires were returned. The findings revealed that IL was being taught in universities library and non-library staff, was compulsory and contributed to the term mark in some institutions. The study also revealed that 44 per cent of the total respondents indicated that the libraries were collaborating with departments and faculty in implementing IL programmes in universities. The study recommends that IL should be an integral part of the university programmes in order to promote the use of databases and to guide students on ethical issues of information use.


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