Willingness to Pay for Genetic Testing for Alzheimer's Disease: A Measure of Personal Utility

Kopits, Ilona; Chen, Clara; Roberts, J. Scott; Uhlmann, Wendy R.; Green, Robert C.

doi:10.1089/gtmb.2011.0028

Cited by 54 publications

(51 citation statements)

References 15 publications

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“…Still, a ‘negative’ test result may offer relief and reduce uncertainty and anxiety, whereas consumers with a highly increased risk may undertake psychological and practical preparations for a possible future. Research participants have reported that genomic testing for Alzheimer's disease may be a coping strategy,10 and a source of valuable information for making important life decisions,11 for tested individuals themselves as well as for their family members. It is a matter of debate whether such psychological and personal options fit within the goals of medicine.…”

Section: Two Perspectives On the Notion Of Personal Utilitymentioning

confidence: 99%

Personal utility in genomic testing: is there such a thing?

2014

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In ethical and regulatory discussions on new applications of genomic testing technologies, the notion of 'personal utility' has been mentioned repeatedly. It has been used to justify direct access to commercially offered genomic testing or feedback of individual research results to research or biobank participants. Sometimes research participants or consumers claim a right to genomic information with an appeal to personal utility. As of yet, no systematic account of the umbrella notion of personal utility has been given. This paper offers a definition of personal utility that places it in the middle of the spectrum between clinical utility and personal perceptions of utility, and that acknowledges its normative charge. The paper discusses two perspectives on personal utility, the healthcare perspective and the consumer perspective, and argues that these are too narrow and too wide, respectively. Instead, it proposes a normative definition of personal utility that postulates information and potential use as necessary conditions of utility. This definition entails that perceived utility does not equal personal utility, and that expert judgment may be necessary to help determine whether a genomic test can have personal utility for someone. Two examples of genomic tests are presented to illustrate the discrepancies between perceived utility and our proposed definition of personal utility. The paper concludes that while there is room for the notion of personal utility in the ethical evaluation and regulation of genomic tests, the justificatory role of personal utility is not unlimited. For in the absence of clinical validity and reasonable potential use of information, there is no personal utility.

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Section: Two Perspectives On the Notion Of Personal Utilitymentioning

confidence: 99%

Personal utility in genomic testing: is there such a thing?

2014

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“…21 Furthermore, clinical utility has a subjective dimension in that, for example, the consumer may find a result useful whereas a physician may not. 22,23 In the view of EASAC-FEAM, it is essential that whatever information exists on the validity and usefulness of a test it is placed in the public domain so that physician and consumer can judge whether or not to avail of a particular service. There is a concomitant need to educate the public to understand what is offered in DTC services, for example to explain the distinction made between testing for monogenic and complex disorders.…”

Section: Governance Principles For Informing Policy Developmentmentioning

confidence: 99%

The perspective from EASAC and FEAM on direct-to-consumer genetic testing for health-related purposes

Fears

Boccia

Cornel³

et al. 2012

Eur J Hum Genet

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Direct-to-consumer (DTC) genetic testing services raise scientific, regulatory and ethical questions. A report was prepared by consultation with an expert Working Group and published by the academies of science (European Academies of Science Advisory Council, EASAC) and medicine (Federation of European Academies of Medicine, FEAM). This report reviews current scientific evidence, ascertains the principles that should underpin the options for action by policy-makers, and discusses the potential for devising proportionate and flexible regulation that enables future innovation, taking account of the work of other expert groups, most notably the European Society of Human Genetics. EASAC-FEAM concluded that DTC genetic testing has little clinical value at present, and expresses especial caution in several specific respects, for example relating to testing for high penetrance, serious disorders, prenatal screening, nutrigenomic and pharmacogenetic testing. It was emphasised that regulation must be on the basis that claims about the link between genetic marker and disease are scientifically valid. Other key issues to address include quality assurance (that includes the professional interpretation of results), transparent supply of accurate information, consideration of the implications for established health services, and clarification of consent procedures for any use of data for research purposes. There are important implications: for the European Commission, in revising the Directive on In Vitro Diagnostic Medical Devices; for professional bodies, in supporting training and guideline development; for the broader research community, in generating the evidence base; and for the public health community, in improving the routine translation of research advances into clinical practice

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“…In fact, APOE testing for AD risk is often mentioned as a paradigmatic example of the personal utility of predictive tests19 20: knowledge of one’s AD risk is thought to be useful personally, rather than clinically, and is thought to affect people’s personal lives, and their social, practical, financial and lifestyle decisions. People have been found to value ‘the information itself, rather than its potential to improve their health.’23 Similar results have been found in relation to non-genetic biomarker testing, particularly among individuals who see themselves as at higher risk of AD, who have a family history of disease or who have cognitive complaints 10 25…”

Section: Defining Personal Utilitymentioning

confidence: 53%

“…Studies have shown, for instance, that people are interested in APOE susceptibility testing for AD for a variety of medical and non-medical reasons, ranging from arranging one’s financial affairs or advance care planning to preparing one’s family members for the possibility of AD or making altruistic contributions to scientific research 23. In fact, APOE testing for AD risk is often mentioned as a paradigmatic example of the personal utility of predictive tests19 20: knowledge of one’s AD risk is thought to be useful personally, rather than clinically, and is thought to affect people’s personal lives, and their social, practical, financial and lifestyle decisions.…”

Section: Defining Personal Utilitymentioning

confidence: 99%

On the personal utility of Alzheimer’s disease-related biomarker testing in the research context

Bunnik

Richard²,

Milne

et al. 2018

J Med Ethics

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Many healthy volunteers choose to take part in Alzheimer's disease (AD) prevention studies because they want to know whether they will develop dementia-and what they can do to reduce their risk-and are therefore interested in learning the results of AD biomarker tests. Proponents of AD biomarker disclosure often refer to the personal utility of AD biomarkers, claiming that research participants will be able to use AD biomarker information for personal purposes, such as planning ahead or making important life decisions. In this paper, the claim that AD biomarkers have personal utility for asymptomatic individuals is critically assessed. It demonstrates that in the absence of clinical validity, AD biomarkers cannot have personal utility and do not serve research participants' autonomy. Over the next few years, many research groups will be confronted with participants' preferences to learn the results of AD biomarker tests. When researchers choose to make results available upon explicit request, they should ensure adequate information provision and education, notably on the uncertain clinical significance of AD biomarker information. Routine disclosure of AD biomarkers to cognitively unimpaired individuals in research settings cannot be justified with an appeal to the personal utility of AD biomarker information.

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Willingness to Pay for Genetic Testing for Alzheimer's Disease: A Measure of Personal Utility

Cited by 54 publications

References 15 publications

Personal utility in genomic testing: is there such a thing?

Personal utility in genomic testing: is there such a thing?

The perspective from EASAC and FEAM on direct-to-consumer genetic testing for health-related purposes

On the personal utility of Alzheimer’s disease-related biomarker testing in the research context

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