History of medical ethics and of research ethics ore broadly can be ...

By Stanley Payne,2014-08-21 12:53
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History of medical ethics and of research ethics ore broadly can be ...

    The history of medical ethics and of research ethics more broadly can be

    understood as a struggle to empower individuals against the authority of clinicians and


    1. In the context of medical practice the goal has between to give the patient the

    capacity to determine for herself whether to undergo treatment and to enhance the

    prospect of fully informed choices and decisions. If there was a target against

    which medical ethics directed it force it was paternalism.

    2. In the context of research ethics with the long history of the exploitation of

    vulnerable populations the goal was to assure that no individual be compelled,

    coerced or deceived into participation in research projects. No matter how

    beneficial the social result of a particular investigation no individual could be

    conscripted into research.

    3. In both the clinical context and research context then the principle of informed

    consent emerged as preempt. To assure the respect for that principle in research

    international and national guidelines asserted the necessity of creating ethics

    review committees that would assure the rights of the individual confidentiality,

    fairness, and of course consent.

    4. Libraries have been written about how these principles and goals play out in

    practice and over the last decade about how global principles should be applied in

    particular contexts, especially in the less developed nations. Here concern about

    justice who does what to whom, with what prospects of benefits to subjects

    has become increasingly crucial.

    It is therefore remarkable that virtually no attention has been given to the ethical principals that should guide public health surveillance which exists at the border of epidemiological and behavioral research and public health practice. This is part of the broader problem of articulating an ethics of public health.

    The effort to articulate a set of broad principles for public health surveillance is crucial but will not be simple. Clinical and research ethics begin with the protection of the individuals and rest on the proposition that individuals cannot be required to serve the

    greater good if they do not consent to do so.

    Public health practice begins with a fundamentally different orientation the protection of the common good can require individuals to do things, to desist from practices that are deemed harmful to others. Paternalism itself is part of the wrap and woof of public health practice.

    It was against this backdrop that Amy Fairchild and I were asked last year by the WHO AIDS program. To draft a set of guidelines on second generation surveillance for HIV/AIDS case notification, behavioral surveillance and studies, serosurveillance were part of the complex set of data sources that would provide a mapping of epidemics.

    We began with the assumption that states have a moral duty within their capacities, to undertake surveillance. Such a duty was derived from the linkage between such efforts and the prevention of disease, the direction of available resources for the

    elimination of suffering, reduction of morbidity and morality. The challenge for us was to provide shape to that duty, to facilitate its execution and to place bounds on such efforts. Even the public health cannot serve as a justification for the violation of certain basic claims and rights. A series of questions surfaced.

    a. What principles of consent ought to apply and when, with what

    implications for efficacy.

    b. What rules and practices of confidentiality ought to govern the

    collection and protection of surveillance data

    c. How ought knowledge about the behavior and condition of individuals

    and communities be used to trigger interventions

    d. How shoe the limits of the capacity of public health systems, structural,

    economic or political, to act on the knowledge derived from

    surveillance effect the ethics of such efforts?

    e. How should the knowledge derived from communities subject to

    surveillance be communicated to them, and relatedly, how should the

    possibility that such knowledge and information about the ???, ?? HIV

    infection, AIDS or risky behaviors which could further stigmatize

    already vulnerable groups, affect the strategy and content of


    Perhaps the most radical departure we have proposed in our WHO document is that all surveillance activities be subject not only to a process of broad community consultation but to ethical review.

    As I noted earlier the history of discourse on research ethics and all international guidelines have stipulated that research protocols be subject to such review but those guidelines have always sought to draw a distinction between research and practice. The latter was not to be subject to formed ethical review. Surveillance is part, indeed a core function, of public health practice and has never been subject to review by ethics committees. Acknowledging the central human rights concerns posed by surveillance, the limits it might impose on informed consent, the problems of confidentiality, the potential for both benefit and the risk of harm, as well as the difficulty of distinguishing clearly between public health research and practice we believe that the time is right to extend the ethical review to public health surveillance activities undertaken by states. But to do so will also require the stipulation of the principles that should guide such efforts both substantive and procedural that is the challenge of articulating an ethics

    of public health practice.

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