PoPulationand Public HealtH etHics

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It would be ideal to get active informed consent from parents if it would be feasible to do so without overly compromising results. research stigmatization harms that result from the surveillance. To help ensure this, monitoring of stigmatization resulting from the surveillance could be combined with the surveillance activity. In what follows, I assume that the expected benefits of the surveillance activity will outweigh expected harms (though this does warrant further empirical study) and, therefore, that conducting such surveillance is, inprinciple, justifiable. This then raises questions about the conditions under which surveillance should occur. Research vs. surveillance If the study described by Dilworth et al. were considered ordinary medical research, then active informed consent of children’s parents would arguably be required in light of research ethics “informed consent” requirements, and action would presumably be taken in cases where children are found to have BMIs that are problematic in light of research ethics “standards of care” requirements. 2 In the surveillance program described, however, consent would be passive (i.e., “opt-out”) and parents will not be notified in cases where children are found to be “at risk.” This raises the following difficult questions: (1) What is the distinction between research and surveillance? and (2) What, if any, are morally relevant differences between research and surveillance such that the ethical requirements regarding the latter should be weaker than those regarding the former? We would need to answer both of these questions before concluding that the study under consideration is not subject to standard research ethics requirements. According to the us Centers for Disease Control and Prevention (CDC), the distinguishing feature of research is the “purpose . . . to generate or contribute to generalizable knowledge”; the distinguishing feature of (relevant) non-research such as surveillance is the “purpose . . . to prevent or control disease or injury and improve health”. 3 There are numerous reasons why this technical distinction might be considered problematic. First, purposes — i.e., intentions — are notoriously difficult to verify, and so a distinction based on purposes seems a problematic way of determining whether a study is research or not. Second, it would appear that, by this definition, much prototypical research (i.e., clinical experimentation) might be considered non-research because it PoPulation anD Public HealtH etHics 28
aims at generating generalizable knowledge precisely in order to reduce disease and improve health. I cannot resolve this issue here; it requires much further analysis. For the sake of argument, however, I will assume that the obesity study under consideration does not aim to generate (any) generalizable knowledge and that it is a clear case of surveillance rather than research. This brings us to the second, more important, question. Even if there is a distinction to be made between research and surveillance, what, if any, might be the morally relevant differences between the two such that the ethical requirements for the latter should be weaker than for the former? Currently, surveillance and research are treated much differently with regard to ethical requirements. For instance, informed consent is (usually) required as a central tenet of research ethics, but often/usually not sought in the context of public health surveillance. Both clinical research and public health surveillance (usually) are aimed at generating information that will be used to improve health. Why should the ethical bar be higher with regard to one kind of study (i.e., research) as opposed to the other kind of study (i.e., surveillance) when both are aimed at generating information that will be used to improve health? The extent to which the ethical principles/guidelines that govern public health surveillance should be similar to, or different from, those that govern research remains largely an open question that requires further ethical analysis. We clearly need some standard international principles/guidelines for the governance of public health surveillance analogous to the Declaration of Helsinki and/or CIoMs guidelines regarding research ethics. This points to another important area for future development in public health ethics. A virtue of the case provided by Dilworth et al. is that reflection on it may shed some light on what principles/guidelines of surveillance ethics should look like. In what follows I will address the following question: Why should research ethics requirements regarding informed consent and standards of care not apply to this case of obesity surveillance ethics? First, with regard to informed consent, Dilworth et al. suggest that if active informed consent were required, too few parents might agree to their children’s Obesity Surveillance in School Children 29 There would presumably be benefits, but no clear harms, if those who clearly need help are informed of this fact, and, in such cases, parents should be informed.
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Page 3 and 4: contents Acknowledgements - page 5
Page 5: acknowleDgeMents The Partners would
Page 8 and 9: » Create a tool to support instruc
Page 10 and 11: Each of the discussants took on thi
Page 12 and 13: Twenty years on, things have change
Page 14 and 15: intervention (say reduction in mort
Page 16 and 17: ethics understands dilemmas not onl
Page 18 and 19: priority setting. 17 Once more, usi
Page 20 and 21: 6 See for example the WHO Commissio
Page 22 and 23: obesity surveillance in scHool cHil
Page 24 and 25: esearch 2 Inevitably children will
Page 26 and 27: esearch Case discussion in response
Page 30 and 31: esearch participation, leading to a
Page 32 and 33: to sHare or not to sHare? Secondary
Page 34 and 35: esearch Scenario shift » What if t
Page 36 and 37: esearch Many different parties have
Page 38 and 39: esearch of his concern for people w
Page 40 and 41: esearcH etHics anD conFlicts oF int
Page 42 and 43: esearch and non-public information
Page 44 and 45: esearch reFerences 1 Public Health
Page 46 and 47: esearch Key ethical dimensions Perh
Page 48 and 49: esearch such support, seen across t
Page 50 and 51: esearch Proposed resolution Enablin
Page 52 and 53: a tool For etHical analysis oF Publ
Page 54 and 55: esearch are explicit. In Quebec, su
Page 56 and 57: esearch reFerences 1 Bayer, R. and
Page 58 and 59: Part two Policy
Page 60 and 61: policy being increasingly introduce
Page 62 and 63: policy behaviour. Therefore, the et
Page 64 and 65: policy 18 Chapman, S. and Freeman,
Page 66 and 67: policy through outdoor smoking, any
Page 68 and 69: policy that this is an injustice. W
Page 70 and 71: DeFerring blooD Donation FroM Men w
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policy lived in certain regions in
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policy 4 Zou, S., Musavi, F., Notar
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policy Case description For nearly
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policy 3 Economic conditions could
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policy essential to examine the his
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policy lMICs. Evidence-based introd
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policy governments, regional develo
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First nations Drinking water Polici
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policy federal government was aware
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policy reFerences 1 Health Canada.
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policy Core issue Case study author
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policy Additional issues It may be
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policy Arguably, an exception might
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policy Case Following the pharmaceu
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policy 3 What potential harms may b
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policy in the “anti-cancer vaccin
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policy adults may choose for themse
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policy Men also suffer some HPV-cau
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ManDatory iMMunization oF local Pub
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policy for exemptions and declinati
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policy Case discussion in response
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policy the degree of infringement o
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Part tHree Practice
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practice Case The Inquiry found tha
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practice Questions for discussion 1
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practice is a basic ethical obligat
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practice harm is remote, the cost/b
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practice In what follows, I will de
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practice will end up having to comp
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practice Getting Clear on What’s
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practice Cervical cancer is relativ
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practice principle should only be t
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practice potentially cause the gene
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practice Nations’ constitutional
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practice The ethical principle of b
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practice Identify the options avail
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