Competence, Capacity, and Informed Consent: Beyond the Cognitive-Competence Model

Kluge, Eike‐Henner W.

doi:10.1353/cja.2005.0077

Cited by 24 publications

(42 citation statements)

References 19 publications

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“…21 NO. 55 NBS, suggesting that the findings that parents are not receiving any information 29,66,67 and are unaware about screening 8,67,78,86,93 are not purely historical. These data also highlight that the practice of assuming that existing parents are informed about NBS through previous pregnancies, which has also been documented in other studies, 18 needs to be questioned.…”

Section: Discussionmentioning

confidence: 99%

“…52 It has been observed that the concept of autonomous authorisation leads to 'theoretical confidence, and practical disquiet', 53 providing a theoretical framework for informed consent that is, in practice, difficult to realise and can be problematic ethically when operationalised. Many authors have argued that it is rare in practice to achieve intentionality, understanding and control, [54][55][56] leaving health-care providers and researchers in a vulnerable position. As a consequence, lower standards of consent are often adoptedideas such as presumed consent, broad consent and open consent may represent necessary compromises if the ideal of informed consent cannot be realised, but may also dilute and devalue the concept of informed consent.…”

Section: Theories Of Informed Consent: Developing An Analytical Framementioning

confidence: 99%

“…21 NO. 55 Pandor et al 119,171 did not include an explicit value to quantify the impact of this 'harm' in their model even though the study described the need to provide information to reduce the anxiety that parents feel on the receipt of a false-positive result. The authors justified this omission by stating that any psychological disbenefits caused by screening would be far outweighed by the improvement in quality of life for children that a screening programme would bring.…”

Section: Doi: 103310/hta21550mentioning

confidence: 99%

See 2 more Smart Citations

Provision of information about newborn screening antenatally: a sequential exploratory mixed-methods project

Ulph

Wright

Dharni

et al. 2017

Health Technol Assess

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BackgroundParticipation in the UK Newborn Bloodspot Screening Programme (NBSP) requires parental consent but concerns exist about whether or not this happens in practice and the best methods and timing to obtain consent at reasonable cost.ObjectivesTo collate all possible modes of prescreening communication and consent for newborn (neonatal) screening (NBS); examine midwives’, screening professionals’ and users’ views about the feasibility, efficiency and impact on understanding of each; measure midwives’ and parents’ preferences for information provision; and identify key drivers of cost-effectiveness for alternative modes of information provision.DesignSix study designs were used: (1) realist review – to generate alternative communication and consent models; (2) qualitative interviews with parents and health professionals – to examine the implications of current practice for understanding and views on alternative models; (3) survey and observation of midwives – to establish current costs; (4) stated preference surveys with midwives, parents and potential future parents – to establish preferences for information provision; (5) economic analysis – to identify cost-effectiveness drivers of alternative models; and (6) stakeholder validation focus groups and interviews – to examine the acceptability, views and broader impact of alternative communication and consent models.SettingProviders and users of NBS in England.ParticipantsStudy 2: 45 parents and 37 health professionals; study 3: 22 midwives and eight observations; study 4: 705 adults aged 18–45 years and 134 midwives; and study 6: 12 health-care professionals and five parents.ResultsThe realist review identified low parental knowledge and evidence of coercive consent practices. Interview, focus group and stated preference data suggested a preference for full information, with some valuing this more than choice. Health professionals preferred informed choice models but parents and health professionals queried whether or not current consent was fully informed. Barriers to using leaflets effectively were highlighted. All studies indicated that a ‘personalised’ approach to NBS communication, allowing parents to select the mode and level of information suited to their learning needs, could have added value. A personalised approach should rely on midwife communication and should occur in the third trimester. Overall awareness was identified as requiring improvement. Starting NBS communication by alerting parents that they have a choice to make and telling them that samples could be stored are both likely to enhance engagement. The methods of information provision and maternal anxiety causing additional visits to health-care professionals were the drivers of relative cost-effectiveness. Lack of data to populate an economic analysis, confirmed by value of information analysis, indicated a need for further research.LimitationsThere are some limitations with regard to the range of participants used in studies 2 and 3 and so caution should be exercised when interpreting some of the results.ConclusionsThis project highlighted the importance of focusing on information receipt and identified key communication barriers. Health professionals strongly preferred informed consent, which parents endorsed if they were made aware of sample storage. Uniform models of information provision were perceived as ineffective. A choice of information provision was supported by health professionals and parents, which both enhances cost-effectiveness and improves engagement, understanding and the validity of consent. Remaining uncertainties suggest that more research is needed before new communication modes are introduced into practice. Future research should measure the impact of the suggested practice changes (informing in third trimester, information toolkits, changed role of midwife).Trial registrationCurrent Controlled Trials ISRCTN70227207.FundingThis project was funded by the NIHR Health Technology Assessment programme and will be published in full inHealth Technology Assessment; Vol. 21, No. 55. See the NIHR Journals Library website for further project information.

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Section: Discussionmentioning

confidence: 99%

Section: Theories Of Informed Consent: Developing An Analytical Framementioning

confidence: 99%

Section: Doi: 103310/hta21550mentioning

confidence: 99%

See 1 more Smart Citation

Provision of information about newborn screening antenatally: a sequential exploratory mixed-methods project

Ulph

Wright

Dharni

et al. 2017

Health Technol Assess

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“…In addition to cognitive functions, decision making in general and decisional capacity in informed consent in particular involve empathy and emotions [2, 6,9,10,21,22,24]. Empathy describes the ability to share another person's cognitive and emotional inner life (see [25,26, 27 ,28,29 ,30,31]).…”

Section: Informed Consent and Emotionsmentioning

confidence: 99%

What is neuroethics? Empirical and theoretical neuroethics

Northoff

2009

Current Opinion in Psychiatry

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“…Persons are centres of rights and obligations and have incommensurable and inherent worth; objects, on the other hand, have only instrumental value. Therefore values that ascribe only instrumental value to persons are morally mistaken and violate the principle of the autonomy and dignity of the person [30,32,39]. Consequently, sex-based values that ascribe only an instrumental value to persons are ethically indefensible in themselves.…”

Section: Values Ethical Principles and Public Actionsmentioning

confidence: 99%

Sex Selection: Some Ethical And Policy Considerations

Kluge

2007

Health Care Anal

Self Cite

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Sex selection, which refers to the attempt to choose or control the sex of a child prior to its birth, has become the subject of increasing ethical scrutiny and many jurisdictions have criminalized it except for serious sex-linked diseases or conditions that cannot easily be ameliorated or remedied. This paper argues that such a blanket prohibition is ethically unwarranted because it is based on a flawed understanding of the difference between sexist values and mere sex-oriented preferences. It distinguishes between ethics and public policy, and suggests a way of allowing preference-based sex selection as a matter of public policy without permitting value-based sex selection. It further argues that medically-based sex selection should be publicly funded but that preference-base sex selection should not be paid for by society, and that the prohibition against value-based sex selection should be enforced through legislation that controls the licensing of health care facilities and through disciplinary procedures against health care professionals.

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Competence, Capacity, and Informed Consent: Beyond the Cognitive-Competence Model

Cited by 24 publications

References 19 publications

Provision of information about newborn screening antenatally: a sequential exploratory mixed-methods project

Provision of information about newborn screening antenatally: a sequential exploratory mixed-methods project

What is neuroethics? Empirical and theoretical neuroethics

Sex Selection: Some Ethical And Policy Considerations

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