scholarly journals Person-Oriented Research Ethics and Dementia:The Lack of Consensus

2020 ◽  
Vol 41 (1) ◽  
pp. 31-51
Author(s):  
Olivia Silva ◽  
M. Ariel Cascio ◽  
Eric Racine
Keyword(s):  
Research Ethics ◽  
Evidence Based ◽  
Ethical Challenges ◽  
High Importance ◽  
Ethics Framework ◽  
Ethics Research ◽  
Dementia Research ◽  
Research Ethics Boards ◽  
Practical Recommendations ◽  
Oriented Research

Research ethics extends beyond obtaining initial approval from research ethics boards. The previously established person-oriented research ethics framework provides guidelines for understanding ongoing ethics throughout the tasks of a research project, in a variety of research contexts. It focuses primarily on the relational and experiential aspects of research ethics, organized around five guideposts: (1) focus on researcher-participant relationships; (2) respect for holistic personhood; (3) acknowledgment of lived world; (4) individualization; and (5) empowerment in decision-making. Given the widespread impact of dementia and the ethical challenges dementia research presents, conducting meaningful, ethical research is of high importance. This review explores this person-oriented framework in the context of dementia by examining existing literature on ethics practices in dementia research. We use a critical interpretive literature review to examine publications from 2013 to 2017 for content related to the five guideposts of person-oriented research ethics. While there is much literature addressing the relational and experiential aspects of research ethics, there is a lack of unanimous conclusions and concrete suggestions for implementation. We compiled practical recommendations from the literature, highlighting tensions and suggesting furthering evidence-based ethics research fieldwork to construct an accessible, easy-to-use set of guidelines for researchers that will assist in putting person-oriented research ethics into practice in dementia research.

Uneasy Relations: Crime Ethnographies and Research Ethics

2021 ◽  
pp. 39-59
Author(s):  
Kevin D. Haggerty
Keyword(s):  
Qualitative Research ◽  
Informed Consent ◽  
Research Ethics ◽  
Criminal Behavior ◽  
Review Process ◽  
Ethical Conduct ◽  
Ethics Framework ◽  
The Past ◽  
Ethics Review ◽  
Research Ethics Boards

This chapter accentuates some of the reasons why crime ethnographies can face difficulties with the ethics review process, including prominent issues relating to informed consent, risk and harm, anonymity, and criminal behavior. Universities in most Western countries have established research ethics boards over the past twenty years responsible for assessing the ethical conduct of research. Qualitative research can fit poorly into the largely positivist ethics framework, resulting in an often-frustrating situation for ethnographers seeking to move ahead with their research. One paradox of this situation is that the ethics process itself seems poised to give rise to a subset of academic deviants in the form of crime ethnographers who may find that they are obliged to circumvent or disregard some formal ethical strictures in order to engage in ethnographic practices that otherwise seem uncontroversial or even innocuous.

scholarly journals PROmoting integrity in the use of RESearch results

2021 ◽  
Vol 10 (1) ◽  
pp. 28-31
Author(s):  
Emmanuel Detsis ◽  
Ron Iphofen
Keyword(s):  
Research Ethics ◽  
Full Range ◽  
Cutting Edge ◽  
Evidence Based ◽  
Ethical Challenges ◽  
Research Results ◽  
Normative Framework ◽  
Evidence Based Policy ◽  
Use Of Research

PROmoting integrity in the use of RESearch results The overall goal of the PRO-RES project is to build a research ethics and integrity framework devised cooperatively with, and seen as acceptable by, the full range of relevant stakeholders and similar to Oviedo/ Helsinki. This will be a normative framework for evidence-based policy originating from cutting edge research responses to ethical challenges.

Research Ethics Board/Institutional Review Board Variability and Other Ethical Challenges in Multi-Site Research Involving Participants on the Autism Spectrum

2019 ◽  
pp. 77-86
Author(s):  
Mackenzie Salt
Keyword(s):  
Research Ethics ◽  
Vulnerable Populations ◽  
Autism Spectrum ◽  
Ethical Review ◽  
Ethical Challenges ◽  
Adults With Autism ◽  
Institutional Review ◽  
Research Ethics Boards ◽  
Multicentre Research ◽  
Ethical Review Process

Doing research at multiple sites can create ethical challenges for researchers, especially those working with vulnerable populations. During the ethical review process, different research ethics boards can disagree on interpretations of research ethics concepts such as capacity to consent, vulnerability, and autonomy. In this chapter, experience in conducting a multi-year, multicentre study involving studying the communication skills of adults with autism is discussed, and the ethical challenges that arose are addressed, focusing on ethical challenges of recruiting participants from multiple sites and detailing interactions with the various research ethics boards involved. Advice and suggestions are provided for other researchers on how to address some of the challenges in doing multicentre research involving participants from vulnerable populations.

The ethics of pandemic preparedness revisited - autonomy, quarantine, transferability and trust

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
P Schröder-Bäck ◽  
T Schloemer ◽  
K Martakis ◽  
C Brall
Keyword(s):  
Crisis Management ◽  
Ethical Issues ◽  
Lessons Learned ◽  
Point Of View ◽  
Ethical Challenges ◽  
Pandemic Preparedness ◽  
Ethical Aspects ◽  
Outbreak Management ◽  
Ethics Framework ◽  
Ethical Point

Abstract Background The outbreak of SARS in 2002 lead to a public health ethics discourse. The crisis management of that time was ethically analysed and lessons to be learned discussed. Scholarship and WHO, among others, developed an ethics of pandemic preparedness. The current “corona crisis” also faces us with ethical challenges. This presentation is comparing the two crises from an ethical point of view and a focus on Europe. Methods An ethics framework for pandemic preparedness (Schröder et al. 2006 and Schröder-Bäck 2014) is used to make a synopsis of ethical issues. Ethical aspects of 2002 and 2020 that were discussed in the literature and in the media are compared. For 2020, the focus is on interventions in Italy, Germany, Switzerland, and the Netherlands. Results Topics that emerged from the 2002 crisis were, among others, revolving around aspects of stigmatisation and fair distribution of scarce resources (esp. vaccines, antivirals). Currently, most urgent and ethically challenging aspects relate to social distancing vs. autonomy: Isolation and quarantine are handled differently across Europe and the EU. Questions of transferability of such interventions prevail. Contexts vary vertically over time (2002 vs. 2020) and horizontally (e.g. between Italy and Germany at the same time). Furthermore, trust in authorities, media and health information is a key issue. Conclusions Ethical aspects are key for good pandemic preparedness and management. The context of the crises between 2002 and 2020 has slightly changed, also based on “lessons learned” from 2002. This has implications on ethical issues that are being discussed. New lessons will have to be learned from the 2020 crisis. Key messages Pandemic preparedness and outbreak management entail many ethical tensions that need to be addressed. Currently, questions of trust and transferability are key to the crisis management, further ethical issues could still emerge.

MRI Research Proposals Involving Child Subjects: Concerns Hindering Research Ethics Boards from Approving Them and a Checklist to Help Evaluate Them

2011 ◽  
Vol 20 (1) ◽  
pp. 115-129 ◽  
Author(s):  
J. DEBORAH SHILOFF ◽  
BRYAN MAGWOOD ◽  
KRISZTINA L. MALISZA
Keyword(s):  
United States ◽  
Research Ethics ◽  
Gold Standard ◽  
The United States ◽  
Institutional Review Boards ◽  
Scientific Review ◽  
Initial Development ◽  
Institutional Review ◽  
Research Ethics Boards ◽  
A Current

The process of research is often lengthy and can be extremely arduous. It may take many years to proceed from the initial development of an idea through to the comparison of the new modalities against a current gold-standard practice. Each step along the way involves rigorous scientific review, where protocols are scrutinized by multiple scientists not only in the specific field at hand but related fields as well. In addition to scientific review, most countries require a further review by a panel that will specifically address the ethics of the proposed research. In Canada, those panels are referred to as Research Ethics Boards (REB), with the United States counterparts known as Institutional Review Boards (IRB).

scholarly journals A Malawi guideline for research study participant remuneration

2018 ◽  
Vol 3 ◽  
pp. 141
Author(s):  
Stephen B. Gordon ◽  
Lameck Chinula ◽  
Ben Chilima ◽  
Victor Mwapasa ◽  
Sufia Dadabhai ◽  
...  
Keyword(s):  
Research Ethics ◽  
Current Literature ◽  
Best Practice ◽  
World Wide ◽  
Research Study ◽  
Study Participant ◽  
Research Participant ◽  
Ethics Committees ◽  
Evidence Based ◽  
Research Ethics Committees

Background: Research participant remuneration has been variable and inconsistent world-wide for many years owing to uncertainty regarding best practice and a lack of written guidelines for investigators and research ethics committees.  Recent recommendations are that researchers and regulators should develop regionally appropriate written guidelines to define reasonable remuneration based on expense reimbursement, compensation for time and burden associated with participation.   Incentives to motivate participation are acceptable in specific circumstances. Methods: We wished to develop regionally informed, precise and applicable guidelines in Malawi that might also be generally useful for African researchers and review committees.  We therefore reviewed the current literature and developed widely applicable and specific remuneration tables using acceptable and evidence-based payment rationales. Results: There were good international guidelines and limited published regional guidelines.  There were published examples of best practice and sufficient material to suggest a structured remuneration table.  The rationale and method for the table were discussed at an inter-disciplinary workshop resulting in a reimbursement and compensation model with fixed rates.  Payment is recommended pro rata and equally across a study. Conclusions: Transparent, fair remuneration of research participants is recommended by researchers and regulators in Malawi.  The means to achieve this are now presented in the Malawi research participant remuneration table.

A brief and personal history of ‘what’s in a name’ in reproductive genetics

2020 ◽  
pp. medhum-2019-011812
Author(s):  
Jeff Nisker
Keyword(s):  
Research Ethics ◽  
General Public ◽  
Genetic Diagnosis ◽  
Prenatal Testing ◽  
Normal Embryo ◽  
Preimplantation Genetic Testing ◽  
Reproductive Genetics ◽  
Family Names ◽  
Mitochondrial Replacement Therapy ◽  
Research Ethics Boards

Although Juliet’s claim, ‘What’s in a name? That which we call a rose by any other name would smell as sweet’, may apply to family names, ‘that which we call’ embryos and procedures in reproductive genetics often smell sweet because the names were created to perfume not-so-sweet-smelling practices. Reproductive-genetic scientists and clinicians, including myself, have used perfumed names to make our research smell sweet for research ethics boards, research grant funders, government regulators, hospital administrators and the general public. The sweet-smelling names in reproductive genetics explored here include ‘pre-embryo’, preimplantation genetic ‘diagnosis’, ‘normal’ embryo, ‘suitable’ embryo, ‘healthy’ embryo, preimplantation genetic ‘testing’, ‘non-invasive prenatal testing’, ‘donation’, and most recently ‘mitochondrial replacement therapy’, a sweet-smelling name for germline nuclear transfer prohibited in antireproductive cloning legislation in most countries. In order for informed choices to occur for women who come to clinicians for information regarding reproductive genetics, and for transparency of scrutiny by research ethics boards, governmental regulators and the general public, it is essential that we consider the real meaning of sweet-smelling names in reproductive genetics.

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