Lack of informed consent

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  • #6203
    Alexandra Cuncev
    Participant

    Issues around the ethics of research span over a wide range of fields and research methodologies. At a recent workshop on research ethics and vulnerability (held at the University of Lancaster), informed consent was debated. Are there any cases, disciplines or research methods where one could defend not fully briefing research participants on the research question or research methods? Can the ‘greater good’ or the lack of access to the research field justify lack of consent?

    #6210
    Julia Wood
    Member

    There are some people who cannot give informed consent, e.g. those with later stage dementia, people with severe learning disabilities and those who are unconscious. Some research is needed that would benefit these groups and can only be conducted if these people are included even though they cannot give informed consent.

    #6209
    Thomas Punt
    Member

    This is true.There may be borderline cases.For instance I have done research amongst the long-term unemployed very few of whom would have been classed as having learning difficulties but many of whom were either illiterate or scarcely literate. Although the purpose of the research was carefully explained verbally as well as verbal assurances being given about confidentiality, it was very hard to obtain real informed consent, partly because of a lack of a normal level of cognitive ability on the part of some and also because of cynicism about the real purpose of the research e.g obvious. fears that it was a devious plot to catch benefit cheats (although there were respondents who finally threw caution to the winds and then explained in great detail how they were able to work the system!). In this case would it have been more ethical to abandon the research altogether unless people were able to understand exactly what the purpose of the research was?

    #6208
    Mridula
    Member

    And in online forums sometimes participants insist on being quoted by their screen names or first names, as they feel the matter is related to expertise (this was in context of destination image of India) and the issue is not sensitive!

    #6207
    Guia Apostle
    Member

    Regardless of one’s view of the ‘greater good’ or greater benefits, as researchers, the inherent dignity and worth of human beings, including our awareness in the vulnerability of those who are being researched must supersede the purpose of the researcher. One can find other ways of indirectly finding the answers to the most perplexing problems by using the ecological perspective e.g. the environment, secondary resources, perceptions of those surrounding the most vulnerable population.

    #6206

    I think this is an interesting and important question. The very serious issue of the benefit (or otherwise) of ‘covert’ research seems to have fallen off the agenda in the face of a basic assumption that informed consent to research is in everyone’s interests, as if all research were a clinical trial.

    I am currently involved with a large-scale project involving the collection of information about a high-risk group of offenders where informed consent is not being sought for participation. The justification for this is that the men and women in question pose such a risk to the public that their ability to ‘refuse to participate’ is not an acceptable trade-off against the interests of public protection.

    This is, I realise, a very tricky ethical position, yet in the UK there are forms of scrutiny available (such as the National Information Goverance Board) that will carefully weigh up the pros and cons of conducting research without consent above and beyond the oversight given by research ethics committees.

    I do take Guia’s point about using ecological resources, but I am not always sure that this approach does justice to the individual’s perception of his or her circumstances and problems. It seems a more complex question that touches on issues of valuable subjectivity and the social consequences of the research.

    #6205

    Thos of us in IRBs that regularly review proposal from psychologists are accustomed to encountering designs where “deception” is actually a necessary variable. Were deception is justified and used, the usual requirement is that a debriefing fully inform the subject post-hoc. and that debriefing may include the opportunity for the subject to withdraw their data from the study.

     

    I am afraid I don’t understand your question about the “greater good” or the lack of access. The fully informed subject of Human Subjects Research must understand that they are going to be a subject of research and that no benefit will accrue to them, only to the greater good of knowledge, humanity, etc. There is no “greater good” unless it is acknowledged by the potential subject. Otherwise, one must assume that the decision-making process is driven by needs, wants, or desires with more personal consequences. That, by the way, is what makes compensation in human subjects research such a sticky wicket.

     

    Again, for IRBs and researchers, the question of obtaining informed consent from someone unable to give it simply means that there is a call for a higher level of diligence, documentation, and system of checks and balances. Again, it is possible to do and still remain within ethical bounds.

    #6204

    Persons under the legal age to sign a contract as well as those who are medically, mentally or psychologically impaired, are not considered capable of giving  informed consent. In the event that the potential participant cannot give her/his consent (orally or in writing), it is essential to obtain the consent of a parent or legal guardian, or a person legally appointed as decision-maker for that individual. This means that the proxy must be fully cognisant of the purpose and nature of the research as well as the dissemination of the results of the study. It is unethical practice not to obtain the informed consent of the individual or her /his proxy prior to collecting the data – observation or interviewing.

    Mr Put’s comment that “partly because of a lack of a normal level of cognitive ability on the part of some” only serves to demonstrate that too often there is a wide gap between the researcher and subjects. As researchers we need to acknowledge that differences in religious orientation, culture, nationality, ethnicity and /or race are factors that lead to misunderstanding (errors). Has it ever occurred to you, as the researcher, that there is a high probability that those you attempt to recruit and enrol in your study are judging you in the same manner as you judge them? Giving that all or most social and behavioural research have been conducted among the most vulnerable in society, it is a wonder that you point to the “cynicism about the real purpose of the research”. First, is the level of cynicism real or perceived? To the extent that it is real can you blame them?  Let us not forget that most, if not all, research is conducted among vulnerable groups while the researcher (even if a member of the vulnerable group) is representing or seen to represent the more socially powerful.  As a researcher, I would be surprised to find that potential participants do not question the purpose of the research and the possible misuse of the findings: Let us not forget the unethical and immoral nature of experiments carried out during the past century such as Nazi eugenic experiments, experiments on mentally retarded children in the USA, contraceptive experiments on poor Mexican American women, malaria experiments on prisoners in the USA, and those conducted during the Cold War era.

     

    Mr. Freestone, I am alarmed that you, as a researcher would justify not seeking informed consent from these individuals because they are members of a certain category of prisoners. I think that you are denying these people their rights as human beings, regardless of the gravity of their offenses.  As researcher you are not asked to give up your subjective feelings, only to suspend them while involved in the research process. If you think that these folks are too horrible to see them as human beings, then, frankly, I do not see how you can study them. They most likely have done horrible, unspeakable things, but they are human beings. If you plan to go into the field, at least one will, without fail, see right through you.  I don’t think that researchers should look down on the people that they study. This is not respectful worthy in the least. It is worthwhile to remember that if such people did not exist you might have to look for a different occupation. You should at least respect this cold, hard fact.  And, why are you so worried about the “public’s protection” when they are already incarcerated?  Truthfully, I am worried about your potential participants I am sure that those involved in the now infamous, immoral, unethical Tuskegee experiment in the USA (in which Black prisoners were deliberately infected with Syphilis, and WITHOUT INFORFMED CONSENT) also felt that these prisoners were unworthy of being informed.  I do not understand how the proposal for this study passed the IRB?  I am in total agreement with Guia Apostle, who correctly states “Regardless of one’s view of the ‘greater good’ or greater benefits, as researchers, the inherent dignity and worth of human beings, including our awareness in the vulnerability of those who are being researched must supersede the purpose of the researcher.”

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