Research ethics

2017 ◽  
Author(s):  
Daisy Fancourt
Keyword(s):  
Research Ethics ◽  
Vulnerable Populations ◽  
Ethical Issues ◽  
Research Projects ◽  
Health Practice ◽  
Consent Forms ◽  
Capacity To Consent ◽  
Ethical Frameworks ◽  
The Common ◽  
Arts In Health

Ethics are sometimes not considered relevant to arts interventions which appear unlikely to do harm and seemingly only offer benefits. However, this chapter will outline why ethics are so crucial to arts in health practice and research. It will outline at what stages of practice and research ethical issues can be involved, explore some of the common ethical issues that arise and their potential solutions, and situate this within some of the most common ethical frameworks and guidelines. The chapter will also focus in particular on gaining consent from participants, including from vulnerable populations such as children and those without the capacity to consent. And it will provide template information sheets and consent forms that can be adapted for research projects.

Changing Ethical Frameworks: From Individual Rights to the Common Good?

2011 ◽  
Vol 20 (4) ◽  
pp. 533-545 ◽  
Author(s):  
MARGIT SUTROP
Keyword(s):  
Common Good ◽  
Ethical Issues ◽  
Conceptual Base ◽  
Ethical Frameworks ◽  
Long Period ◽  
Political Ideologies ◽  
The Common ◽  
The Individual ◽  
Liberal Individualism ◽  
The Relationship

Whereas in the 1970s early bioethicists believed that bioethics is an arena for the application of philosophical theories of utilitarianism, deontology, and natural law thinking, contemporary policy-oriented bioethicists seem rather to be keen on framing ethical issues through political ideologies. Bioethicists today are often labeled “liberal” or “communitarian,” referring to their different understandings of the relationship between the individual and society. Liberal individualism, with its conceptual base of autonomy, dignity, and privacy, enjoyed a long period of dominance in bioethics, but it has increasingly come under attack from ideologies promoting a more salient role for concepts of solidarity, community, and public interest.

scholarly journals Research Ethics and the Governance of Research Projects: The Potential of Internet Home Pages

2005 ◽  
Vol 10 (3) ◽  
pp. 80-89 ◽  
Author(s):  
Martyn Denscombe
Keyword(s):  
Research Ethics ◽  
Ethical Issues ◽  
Good Governance ◽  
Social Research ◽  
Web Pages ◽  
Research Projects ◽  
Home Pages ◽  
Research Project ◽  
Research Protocols ◽  
On Line

This paper explores the potential of research project Home Pages in relation to the growing need for good governance of research projects. In particular, the paper considers the benefits such web pages might have in terms of research ethics and argues that research project Home Pages can provide a very straightforward, practical means of addressing a number of ethical issues related to both on-line and off-line research. Limitations to the use of research project Home Pages are also discussed and conclusions are drawn about the value of establishing appropriately designed research project Home Pages as an integral component of social research protocols.

Applying Ethical Theories to Genetic Counseling Practice

2019 ◽  
pp. 89-110
Author(s):  
Barbara B. Biesecker ◽  
Kathryn F. Peters ◽  
Robert Resta
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Ethical Issues ◽  
Brca Mutation ◽  
Ethical Framework ◽  
Feminist Ethics ◽  
Ethical Frameworks ◽  
Testing Technology ◽  
Ethical Approaches ◽  
The Common

Genetic counseling engenders thorny ethical issues that expand as genetic testing technology continues to evolve. Genetic counselors are frequently faced with bioethical dilemmas that, by their very nature, are not easily resolved. This chapter reviews some of the common ethical frameworks for considering ethically complex situations—deontology, casuistry, principilism, and feminist ethics. These ethical approaches are illustrated by applying them to a case of a mother who is a BRCA mutation carrier and is trying to make a decision about genetic testing for her fourteen-year-old daughter. No one ethical framework will be applicable to all genetic counseling dilemmas, but familiarity with these different approaches can help counselors better understand the value of each approach in assessing a variety of clinical situations. A model is presented showing how to manage, think about, and think through ethical dilemmas.

scholarly journals Risk-Aversion or Ethical Responsibility?

2018 ◽  
Vol 12 (2) ◽  
pp. 148-162
Author(s):  
Stephen Jacobs ◽  
Alan Apperley
Keyword(s):  
Higher Education ◽  
Risk Aversion ◽  
Medical Research ◽  
Research Ethics ◽  
Ethical Issues ◽  
Ethics Committees ◽  
Ethical Responsibility ◽  
Ethnographic Research ◽  
Research Projects ◽  
Audit Culture

Ethics seems to be of increasing concern for researchers in Higher Education Institutes and funding bodies demand ever more transparent and robust ethics procedures. While we agree that an ethical approach to fieldwork in religion is critical, we take issue with the approach that ethics committees and reviews adopt in assessing the ethicality of proposed research projects. We identify that the approach to research ethics is informed by consequentialism – the consequences of actions, and Kantianism – the idea of duty. These two ethical paradigms are amenable to the prevailing audit culture of HE. We argue that these ethical paradigms, while might be apposite for bio-medical research, are not appropriate for fieldwork in religion. However, because ethics should be a crucial consideration for all research, it is necessary to identify a different approach to ethical issues arising in ethnographic research. We suggest that a virtue ethics approach – concerned with character – is much more consistent with the situated, relational and ongoing nature of ethnographic research.

Pandemic Disease, Public Health, and Ethics

2019 ◽  
pp. 796-811 ◽  
Author(s):  
Maxwell Smith ◽  
Ross Upshur
Keyword(s):  
Public Health ◽  
Ethical Issues ◽  
Ethical Challenges ◽  
Pandemic Preparedness ◽  
Scarce Resources ◽  
Ethical Frameworks ◽  
Health Measures ◽  
Care Workers ◽  
The Face ◽  
Conducting Research

Infectious disease pandemics raise significant and novel ethical challenges to the organization and practice of public health. This chapter provides an overview of the salient ethical issues involved in preparing for and responding to pandemic disease, including those arising from deploying restrictive public health measures to contain and curb the spread of disease (e.g., isolation and quarantine), setting priorities for the allocation of scarce resources, health care workers’ duty to care in the face of heightened risk of infection, conducting research during pandemics, and the global governance of preventing and responding to pandemic disease. It also outlines ethical guidance from prominent ethical frameworks that have been developed to address these ethical issues and concludes by discussing some pressing challenges that must be addressed if ethical reflection is to make a meaningful difference in pandemic preparedness and response.

The Ethics of AI in Biomedical Research, Patient Care, and Public Health

2020 ◽  
pp. 702-718 ◽  
Author(s):  
Alessandro Blasimme ◽  
Effy Vayena
Keyword(s):  
Public Health ◽  
Patient Care ◽  
Biomedical Research ◽  
Disease Surveillance ◽  
Ethical Issues ◽  
Ethical Review ◽  
Ethical Challenges ◽  
Healthcare Provision ◽  
Social Scientists ◽  
Ethical Frameworks

This chapter explores ethical issues raised by the use of artificial intelligence (AI) in the domain of biomedical research, healthcare provision, and public health. The litany of ethical challenges that AI in medicine raises cannot be addressed sufficiently by current regulatory and ethical frameworks. The chapter then advances the systemic oversight approach as a governance blueprint, which is based on six principles offering guidance as to the desirable features of oversight structures and processes in the domain of data-intense biomedicine: adaptivity, flexibility, inclusiveness, reflexivity, responsiveness, and monitoring (AFIRRM). In the research domain, ethical review committees will have to incorporate reflexive assessment of the scientific and social merits of AI-driven research and, as a consequence, will have to open their ranks to new professional figures such as social scientists. In the domain of patient care, clinical validation is a crucial issue. Hospitals could equip themselves with “clinical AI oversight bodies” charged with the task of advising clinical administrators. Meanwhile, in the public health sphere, the new level of granularity enabled by AI in disease surveillance or health promotion will have to be negotiated at the level of targeted communities.

Research Ethics Committees’ Oversight of Biomedical Research in South Africa: A Thematic Analysis of Ethical Issues Raised During Ethics Review of Non-Expedited Protocols

2019 ◽  
Vol 14 (2) ◽  
pp. 107-116 ◽  
Author(s):  
Blessing Silaigwana ◽  
Douglas Wassenaar
Keyword(s):  
South Africa ◽  
Research Ethics ◽  
South African ◽  
Biomedical Research ◽  
Ethical Issues ◽  
Ethics Committees ◽  
Financial Contracts ◽  
Scientific Validity ◽  
Participant Selection ◽  
Education And Awareness

In South Africa, biomedical research cannot commence until it has been reviewed and approved by a local research ethics committee (REC). There remains a dearth of empirical data on the nature and frequency of ethical issues raised by such committees. This study sought to identify ethical concerns typically raised by two South African RECs. Meeting minutes for 180 protocols reviewed between 2009 and 2014 were coded and analyzed using a preexisting framework. Results showed that the most frequent queries involved informed consent, respect for participants, and scientific validity. Interestingly, administrative issues (non-ethical) such as missing researchers’ CVs and financial contracts emerged more frequently than ethical questions such as favorable risk/benefit ratio and fair participant selection. Although not generalizable to all RECs, our data provide insights into two South African RECs’ review concerns. More education and awareness of the actual ethical issues typically raised by such committees might help improve review outcomes and relationships between researchers and RECs.

Ethics and equity in rare disease research and healthcare

2021 ◽  
Author(s):  
Maria Koromina ◽  
Vasileios Fanaras ◽  
Gareth Baynam ◽  
Christina Mitropoulou ◽  
George P Patrinos
Keyword(s):  
Rare Diseases ◽  
Ethical Issues ◽  
Genetic Diseases ◽  
Ethical Framework ◽  
Middle Income ◽  
Next Generation Sequencing Technology ◽  
Ethical Frameworks ◽  
Rare Genetic Diseases ◽  
Conducting Research ◽  
Key Aspects

Rapid advances in next-generation sequencing technology, particularly whole exome sequencing and whole genome sequencing, have greatly affected our understanding of genetic variation underlying rare genetic diseases. Herein, we describe ethical principles of guiding consent and sharing of genomics research data. We also discuss ethical dilemmas in rare diseases research and patient recruitment policies and address bioethical and societal aspects influencing the ethical framework for genetic testing. Moreover, we focus on addressing ethical issues surrounding research in low- and middle-income countries. Overall, this perspective aims to address key aspects and issues for building proper ethical frameworks, when conducting research involving genomics data with a particular emphasis on rare diseases and genetics testing.

scholarly journals Is It Time to Re-Evaluate the Ethics Governance of Social Media Research?

2018 ◽  
Vol 13 (4) ◽  
pp. 452-454 ◽  
Author(s):  
G. Samuel ◽  
W. Ahmed ◽  
H. Kara ◽  
C. Jessop ◽  
S. Quinton ◽  
...  
Keyword(s):  
Social Media ◽  
Research Ethics ◽  
Ethical Issues ◽  
Real Life ◽  
Ethics Committees ◽  
Research Ethics Committees ◽  
Media Ethics ◽  
Research Institution ◽  
Media Research ◽  
Social Media Research

This article reports on a U.K. workshop on social media research ethics held in May 2018. There were 10 expert speakers and an audience of researchers, research ethics committee members, and research institution representatives. Participants reviewed the current state of social media ethics, discussing well-rehearsed questions such as what needs consent in social media research, and how the public/private divide differs between virtual and real-life environments. The lack of answers to such questions was noted, along with the difficulties posed for ethical governance structures in general and the work of research ethics committees in particular. Discussions of these issues enabled the creation of two recommendations. The first is for research ethics committees and journal editors to add the category of ‘data subject research’ to the existing categories of ‘text research’ and ‘human subject research’. This would reflect the fact that social media research does not fall into either of the existing categories and so needs a category of its own. The second is that ethical issues should be considered at all stages of social media research, up to and including aftercare. This acknowledges that social media research throws up a large number of ethical issues throughout the process which, under current arrangements for ethical research governance, risks remaining unaddressed.

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