Direct-to-consumer genetic testing in the news: a descriptive analysis

Basch, Corey H.; Hillyer, Grace Clarke; Samuel, Lalitha; Datuowei, Erela; Cohn, Betty

doi:10.1007/s12687-022-00613-z

Cited by 6 publications

(5 citation statements)

References 26 publications

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“…The DTC companies store the genetic data frequently linked to a person who requested the test. Law enforcement already started to utilize DTC data to track suspects or their relatives [29]. With an appropriate court order, the law enforcement agencies can compel the DTC companies to produce customers' data matching the health/genetic traits identified by AI.…”

Section: Discussionmentioning

confidence: 99%

Phenotyping Genetic Diseases Through Artificial Intelligence Use of Large Datasets of Government-stored Facial Photographs: Concept, Legal Issues, and Challenges in the European Union

Kováč¹,

Alexandra²,

Varga³

et al. 2023

Preprint

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One in 12 babies is born with a rare genetic disease. Sadly, most cases are undetected until later age, missing time for early treatment and opportunity to prevent complications. Humanity has entered a new era where Big Data collected by governments, including 2D and 3D facial scans, are available. Many rare genetic diseases can be identified by artificial intelligence (AI) analysis of the facial photo. Phenotyping AI utilizations facilitate comprehensive and accurate genetic evaluations. AI processing of this Big Data to identify rare genetic diseases could bring unimaginable benefits to healthcare, although this would be a questionable step in terms of citizen privacy and could lead to future "Orwellian" ramifications with government abuse. Going forward, a balance must be found between protecting the privacy of citizens and the enticing use of AI for their health risks and cost savings through prevention. The unimaginable potential of AI early diagnostics from facial photos also raises various ethical and legal concerns. This paper presents concept, protentional methods and legal and other limitations within EU legal framework in contrast with potential benefits. This paper is focused on AI utilization to early diagnostic of rare genetic diseases. Shift of paradigm in the screening for rare genetic diseases in population with AI face analysis is expected to have a significant impact. The potential of AI algorithms utilizations similar to face2gene app in general population or systematically on Big governmental datasets recording facial traits changes in time can have significant impact on public health but at the same time give raise to profound concern as violation of one’s privacy.

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Section: Discussionmentioning

confidence: 99%

Phenotyping Genetic Diseases Through Artificial Intelligence Use of Large Datasets of Government-stored Facial Photographs: Concept, Legal Issues, and Challenges in the European Union

Kováč¹,

Alexandra²,

Varga³

et al. 2023

Preprint

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“…Supposing the consumer wishes to have their information used in research, a separate consent form must be signed for the company to share data with third-party collaborators [ 89 ]. However, consent forms can have a problematic reading level for a layperson, or companies can induce consent by an easy click required to finalize the order [ 90 ]. As results may be incomplete or complex to interpret [ 89 ], some companies deliver more detailed reports [ 91 ] and often offer tailored diets, nutrition supplements, meals, and exercise plans [ 87 , 92 ].…”

Section: Genetic Testing (Gt)mentioning

confidence: 99%

Obesity and Nutrigenetics Testing: New Insights

Duarte,

Leite-Lais,

Agnez-Lima

et al. 2024

Nutrients

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Background: Obesity results from interactions between environmental factors, lifestyle, and genetics. In this scenario, nutritional genomics and nutrigenetic tests stand out, with the promise of helping patients avoid or treat obesity. This narrative review investigates whether nutrigenetic tests may help to prevent or treat obesity. Scientific studies in PubMed Science Direct were reviewed, focusing on using nutrigenetic tests in obesity. The work showed that few studies address the use of tools in obesity. However, most of the studies listed reported their beneficial effects in weight loss. Ethical conflicts were also discussed, as in most countries, there are no regulations to standardize these tools, and there needs to be more scientific knowledge for health professionals who interpret them. International Societies, such as the Academy of Nutrition and Dietetics and the Brazilian Association for the Study of Obesity and Metabolic Syndrome, do not recommend nutrigenetic tests to prevent or treat obesity, especially in isolation. Advancing nutrigenetics depends on strengthening three pillars: regulation between countries, scientific evidence with clinical validity, and professional training.

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“…Another prominent problem is the lack of clear communication on key topics, issues, and stakeholders that are relevant to diverse participants. News media do not fully disclose critical issues involving genetic and genomic research, such as safety, privacy, and costs (Basch et al, 2023;Chavez-Yenter et al, 2023;Morosoli et al, 2024). Only a small percentage of news articles covering genetic services used sources from healthcare professionals (Basch et al, 2023;Chavez-Yenter et al, 2023).…”

Section: The Present Studymentioning

confidence: 99%

Imbalanced media portrayal: a content analysis of precision medicine in US news of 2015–2021

Peng,

Seo,

Choi

et al. 2024

Front. Commun.

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IntroductionEngaging diverse participants is vital to precision medicine (PM) but has been limited by low knowledge and concerns about various issues related to PM research. News media is an important channel of information that can shape public understanding and perception of PM. However, how PM is represented in news media has not been sufficiently understood.MethodsThe study used quantitative content analysis to evaluate the portrayal of PM in US print news media between 2015 and 2021 (N = 198). Three domains of factors related to PM portrayed in news articles were coded: (1) characteristics of PM, (2) target diseases of PM and their related characteristics, and (3) non-scientific news frames.ResultsThere was considerable news coverage of the treatment benefits of PM, especially for cancer. Potential risks or concerns, non-cancer diseases, and non-treatment issues that could be important to diverse populations were less covered. News articles frequently cited scientists, patients, and government officials with different focuses on PM.DiscussionThe study highlighted the need for accurate and complete information about PM in news media for diverse participants. News media should actively explore social, ethical, and legal issues to support the engagement of diverse populations.

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Direct-to-consumer genetic testing in the news: a descriptive analysis

Cited by 6 publications

References 26 publications

Phenotyping Genetic Diseases Through Artificial Intelligence Use of Large Datasets of Government-stored Facial Photographs: Concept, Legal Issues, and Challenges in the European Union

Phenotyping Genetic Diseases Through Artificial Intelligence Use of Large Datasets of Government-stored Facial Photographs: Concept, Legal Issues, and Challenges in the European Union

Obesity and Nutrigenetics Testing: New Insights

Imbalanced media portrayal: a content analysis of precision medicine in US news of 2015–2021

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