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The value of respect in human research ethics: a conceptual analysis and a practical guide

 


Pieper, I J and Thomson CJH The value of respect in human research ethics: a conceptual analysis and a practical guide Monash Bioeth. Rev. (2014) 32:232–253

A Series on the Four Principles of the Australian National Statement on Ethics Conduct in Human Research

In this issues of the Research Ethics Monthly, Ian Pieper and Colin Thomson continue their series of short summaries of each of their four co-authored articles on the principles that underpin the Australian National Statement, namely, research merit and integrity, justice, beneficence and respect.

The articles were originally published in the Monash Bioethics Review and remain available to subscription holders to that journal. The publisher, Springer, has generously agreed to place each of the four articles on Free Access for one month after the corresponding short summary is published in the Research Ethics Monthly. Last month they revisited their paper entitledBeneficence as a Principle in Human Research.  This month they revisit the paper exploring the principle of respect for humans in the context of human research. The full paper can be found here.

Respect for human beings is an essential component of human research ethics.  It was emphasised in the Nuremberg code and has been continually recognised in all authoritative international and national guidelines since then.

Although primarily reflected in requirements for consent, the central concept is respect for personal autonomy, that is, for the capacity of individuals to be able to put their principles and values into practice. Sometimes the concept of dignity is added, recognising respect for a person’s ability to live in accordance with their desires and values and requiring more than a focus merely on consent.

Individual autonomy has both a volitional component, requiring a decision to be voluntary and not made under compulsion, threats or coercion, and a cognitive component requiring a decisionmaker to have both the capacity and sufficient information to make a decision.  It is important that all stakeholders involved in assessing consent in human research understand these foundational elements of ethically sound consent.

 

This paper outlines and discusses the guidance provided within the National Statement around what is sufficient information and how that should be disclosed, the need for adequate understanding, the assessment of capacity and the requirement of voluntariness including the relevance to decision-makers of relationships with others. The discussion of capacity includes consideration of circumstances involving children, people dependent on medical care or who may have cognitive impairments.

The requirement of voluntary choice and possible impacts from coercion, inducement, dependency, and vulnerability are examined.   In this context, the paper offers a reminder that respect requires more than a focus on consent.  It explores circumstances where a limited disclosure or waiver of the requirement for consent can be granted in order to facilitate important research in ways that are ethically justified.

Ian and Colin have produced an activity sheet to accompany this post. It can be found in the subscribers’ area (https://www.patreon.com/ahrecs). A subscription of only USD15/month (approx AUD21/month) provides access to a growing library of activity items, reflections on papers and news, and other resource items. At least two items are added to the library every month.  These are shared on a creative commons basis, so you are free to use them internally without otherwise engaging AHRECS. These items would ordinarily cost more than AUD500. So becoming an AHRECS patron not only helps AHRECS stay a constructive voice for change it’s a way to get access some terrific items for a great price.

Email gary.allen@ahrecs.com for further information.

Contributors:
Ian Pieper, AHRECS Consultant, Ian’s AHRECS profile
Colin Thomson AM, AHRECS Senior Consultant, colin.thomson@ahrecs.com | Colin’s AHRECS profile

This post may be cited as:
Pieper, I & Thomson C. (25  October 2018) The value of respect in human research ethics: a conceptual analysis and a practical guide. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/the-value-of-respect-in-human-research-ethics-a-conceptual-analysis-and-a-practical-guide

We invite debate on issues raised by items we publish. However, we will only publish debate about the issues that the items raise and expect that all contributors model ethical and respectful practice.



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