Captious certainties: makings, meanings and misreadings of consumer-oriented genetic testing

Paul, Norbert W.; Banerjee, Mita; Michl, Susanne

doi:10.1007/s12687-013-0172-y

Cited by 10 publications

(9 citation statements)

References 24 publications

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“…Demographic factors such as ethnicity, younger age, both gender and education had been associated with non‐consent and greater privacy concerns . Public attitudes may be influenced by notions such as genetic exceptionalism (the idea that genetic data were different and riskier than other health data) and related concerns about genetic predictions such that there were worries for themselves, their kin, fears about possible discrimination, generalization of such data to families and communities, and the lack of control over one's genome . While the public may hold different and varying attitudes over time concerning genetic and genomic studies, future studies need to take into account the population's prevailing attitude concerning any aspect of genetic research and the future use of such tissue samples collected .…”

Section: Discussionmentioning

confidence: 99%

Informed consent for human genetic and genomic studies: a systematic review

et al. 2014

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As genetic and genomic studies grow in scale, there are ethical concerns related to the collection and use of genetic information. The emergence of large public databases potentially redefine the terms of participation in genetic and genomic research, and suggests the changing application of traditional ethical principles such as privacy or consent. For this study, we wanted to see whether such developments are reflected in the informed consent processes in human genetic and genomic studies. Therefore, we performed a systematic review of the empirical studies that examined informed consent involving large genetic databases in human genetic and genomic studies, grouped the identified issues related to the different stakeholders (including subjects, researchers, and institutional review boards) and discussed the limitations and implications of these findings. Major themes related to the place of bioethical considerations, procured tissues, people involved, process of informed consent and study procedures. Frequently raised issues included confidentiality of participants, documentation of informed consent, public attitudes, future use of participant samples or data, and disclosure of results. Awareness and attention to these bioethical issues as well as assiduousness in managing these concerns in genetic/genomic research would further strengthen and safeguard the rights, safety and well-being of genetic research participants.

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Section: Discussionmentioning

confidence: 99%

Informed consent for human genetic and genomic studies: a systematic review

et al. 2014

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“…Such prohibition would, however, also prevent medical improvements, inhibit technological progress and would thus constitute a handicap in international competition between states (Oh et al, 2021 ). Furthermore, medical certainties can also be created without the use of AI, e.g., by making use of genetic testing (Paul et al, 2014 ). Ultimately, banning such useful technologies seems problematic from the perspective of liberal and democratic states, making it a rare exception that can only be considered for extreme cases, such as the editing of the human germline genome (Boggio et al, 2019 ).…”

Section: Using Bans or Limits To Counteract Adverse Selection?mentioning

confidence: 99%

Limiting medical certainties? Funding challenges for German and comparable public healthcare systems due to AI prediction and how to address them

Ulmenstein¹,

Tretter²,

Ehrlich³

et al. 2022

Front. Artif. Intell.

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Current technological and medical advances lend substantial momentum to efforts to attain new medical certainties. Artificial Intelligence can enable unprecedented precision and capabilities in forecasting the health conditions of individuals. But, as we lay out, this novel access to medical information threatens to exacerbate adverse selection in the health insurance market. We conduct an interdisciplinary conceptual analysis to study how this risk might be averted, considering legal, ethical, and economic angles. We ask whether it is viable and effective to ban or limit AI and its medical use as well as to limit medical certainties and find that neither of these limitation-based approaches provides an entirely sufficient resolution. Hence, we argue that this challenge must not be neglected in future discussions regarding medical applications of AI forecasting, that it should be addressed on a structural level and we encourage further research on the topic.

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“…Respondents were asked: "DTC-GT for disease-related purposes is…," with the following answer items: beneficial to the health of the user -harmful to the health of the user, beneficial for society -harmful for society, leading to healthier lifestyle of its users -leading to unhealthier lifestyle of its users, leading to increased feelings of privacy of the userleading to decreased feelings of privacy of the user, ethical -unethical, useful -not useful, reassuring -frightening, importantnot important. These items were based on previously reported attributes towards DTC-GT [18][19][20][21][22][23] combined with expert opinion. Negative items were reverse scored so that a higher score represents a more positive attitude.…”

Section: Independent Variablesmentioning

confidence: 99%

Factors Associated with Acceptability, Consideration and Intention of Uptake of Direct-To-Consumer Genetic Testing: A Survey Study

Stewart

Kokole

Wesselius

et al. 2018

Public Health Genomics

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Background: With interest in personalised health care growing, so is interest in personal genetic testing. This is now offered direct-to-consumer, thereby referred to as direct-to-consumer genetic testing (DTC-GT). Criticisms have been expressed on whether a truly informed decision to undergo testing is made with regard to these services. In order to provide relevant information to achieve this, knowing the characteristics of the expected user population is helpful. Therefore, the aim of this study is to identify characteristics of individuals who (1) find the concept of DTC-GT acceptable and (2) consider undergoing DTC-GT in the distant or near future. Methods: This cross-sectional study investigated factors associated with acceptability, consideration and intention in the Dutch general population. Studied variables included awareness, principles and how-to knowledge, attitude, innovativeness, and multiple demographic characteristics. Generalised linear models were applied to identify associated variables. Results: Full data was obtained for 836 respondents. Of those, 18.3% found DTC-GT somewhat or totally acceptable, whereas 12.6% considered and 5.5% intended to undergo DTC-GT in the distant or near future. Acceptability was greater with lower principles knowledge, and consideration and intention with lower how-to knowledge. A more positive attitude and greater innovativeness were associated with an increase in all 3 outcomes. Conclusion: Informed decision making may be hampered as individuals with lower how-to knowledge were found to be more interested in pursuing testing. The identified characteristics can be used in development and distribution of public and personalized information, in order to help consumers make a truly informed decision.

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Captious certainties: makings, meanings and misreadings of consumer-oriented genetic testing

Cited by 10 publications

References 24 publications

Informed consent for human genetic and genomic studies: a systematic review

Informed consent for human genetic and genomic studies: a systematic review

Limiting medical certainties? Funding challenges for German and comparable public healthcare systems due to AI prediction and how to address them

Factors Associated with Acceptability, Consideration and Intention of Uptake of Direct-To-Consumer Genetic Testing: A Survey Study

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