Neither as harmful as feared by critics nor as empowering as promised by providers: risk information offered direct to consumer by personal genomics companies

Nordgren, Anders

doi:10.1007/s12687-012-0094-0

Cited by 14 publications

(16 citation statements)

References 40 publications

(59 reference statements)

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“…One of the younger women paid a testing service that promised to provide her with advice on optimizing her sporting activities, based on data from 23andMe, but the results contained no relevant information. Fundamentally, participants agreed with expert opinion that regulatory oversight is needed to ensure the quality and safety of DTC testing services (Nordgren, 2014).…”

Section: Maintainsmentioning

confidence: 99%

Keeping data alive: talking DTC genetic testing

Ruckenstein

2016

Information, Communication & Society

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Section: Maintainsmentioning

confidence: 99%

Keeping data alive: talking DTC genetic testing

Ruckenstein

2016

Information, Communication & Society

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“…Several of them promise practical benefits and use prestigious words indicative of strong health benefits. In particular, it is common to appeal to ''empowerment'' and ''identity'' (Nordgren and Juengst 2009;Nordgren 2012)-concepts that are potentially appealing to consumers. DNA information is said to empower the individual, that is, help them take control over their own health by providing access to genetic information and stimulating them to take medical or preventive measures.…”

Section: Personalized Nutrition Services On the Internetmentioning

confidence: 99%

“…It is thus clear that there is a need for legal regulation of nutrigenomic genetic testing (Nordgren 2012).…”

Section: Personalized Nutrition Services On the Internetmentioning

confidence: 99%

Consumers on the Internet: ethical and legal aspects of commercialization of personalized nutrition

Ahlgren

Nordgren

Perrudin³

et al. 2013

Genes Nutr

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Consumers often have a positive attitude to the option of receiving personalized nutrition advice based upon genetic testing, since the prospect of enhancing or maintaining one's health can be perceived as empowering. Current direct-to-consumer services over the Internet, however, suffer from a questionable level of truthfulness and consumer protection, in addition to an imbalance between far-reaching promises and contrasting disclaimers. Psychological and behavioral studies indicate that consumer acceptance of a new technology is primarily explained by the end user's rational and emotional interpretation as well as moral beliefs. Results from such studies indicate that personalized nutrition must create true value for the consumer. Also, the freedom to choose is crucial for consumer acceptance. From an ethical point of view, consumer protection is crucial, and caution must be exercised when putting nutrigenomic-based tests and advice services on the market. Current Internet offerings appear to reveal a need to further guaranty legal certainty by ensuring privacy, consumer protection and safety. Personalized nutrition services are on the borderline between nutrition and medicine. Current regulation of this area is incomplete and undergoing development. This situation entails the necessity for carefully assessing and developing existing rules that safeguard fundamental rights and data protection while taking into account the sensitivity of data, the risks posed by each step in their processing, and sufficient guarantees for consumers against potential misuse.

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“…These finding must be considered in the light of previous research which has demonstrated that intentions or attitudes may not always predict behaviour [32]. In addition, although individuals state they wish to use genetic information to modify risk, studies of direct to consumer genetic testing have so far shown it does not lead to changes in behaviour relating to exercise and diet, or lead to further screening and preventative action [33,34]. …”

Section: Discussionmentioning

confidence: 99%

The attitudes of people with sarcoma and their family towards genomics and incidental information arising from genetic research

et al. 2013

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PurposeThe study aimed to examine attitudes of individuals diagnosed with sarcoma and their family members towards genetics, genomic research and incidental information arising as a result of participating in genetic research.MethodsA questionnaire was administered to 1200 individuals from the International Sarcoma Kindred Study (ISKS). Respondents were divided into three groups: individuals affected with sarcoma (probands), their spouses and family members.ResultsApproximately half of all research participants felt positively towards new discoveries in human genetics. Overall, more were positive in their attitudes towards genetic testing for inherited conditions (60%) but family members were less so. Older participants reported more highly positive attitudes more often than younger participants. Males were less likely to feel positive about new genetic discoveries and more likely to believe they could modify genetic risk by altering lifestyle factors. Almost all ISKS participants believed participants would like to be given ancillary information arising as a result of participating in genetic research.ConclusionsThe only difference between the study groups was the decreased likelihood of family members being highly positive about genetic testing. This may be important if predictive testing for sarcoma becomes available. Generally ISKS research participants supported the notion of returning incidental genetic information to research participants.

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Neither as harmful as feared by critics nor as empowering as promised by providers: risk information offered direct to consumer by personal genomics companies

Cited by 14 publications

References 40 publications

Keeping data alive: talking DTC genetic testing

Keeping data alive: talking DTC genetic testing

Consumers on the Internet: ethical and legal aspects of commercialization of personalized nutrition

The attitudes of people with sarcoma and their family towards genomics and incidental information arising from genetic research

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