Genomic Privacy and Direct-to-Consumer Genetics: Big Consumer Genetic Data -- What's in that Contract?

Phillips, Adrián

doi:10.1109/spw.2015.19

Cited by 13 publications

(9 citation statements)

References 6 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…In 2002, as part of research aiming at identifying the availability of DTC GT, Gollust et al identified 14 companies selling health-related DTC GT [5]. A recent study by Phillips (2015) revealed that the market of health-related DTC GT has grown significantly in the last decade reaching over 100 companies [6]. Considering that these searchers were performed in English, the total number of companies offering DTC GT may be assumed to be even larger.…”

Section: Current Offer Of Dtc Gt -Expanded Scope Audience and New Tementioning

confidence: 99%

“…Furthermore, the web-based interpretation services can provide health-related information on the basic of raw data received in ancestry genetic testing, which is discussed in the following sections of this article. (2015) revealed that the market of health-related DTC GT has grown significantly in the last decade reaching over 100 companies [6]. Considering that these searchers were performed in English, the total number of companies offering DTC GT may be assumed to be even larger.…”

mentioning

confidence: 99%

See 1 more Smart Citation

Current Ethical and Legal Issues in Health-Related Direct-To-Consumer Genetic Testing

2017

View full text Add to dashboard Cite

work is also supported by the COST Action IS1303 "Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives" (CHIP ME). None of these funding sources have had any involvement in the preparation of this article.The authors declare no conflict of interest. 2 AbstractA variety of health-related genetic testing is currently advertised directly to consumers. This article provides a timely overview of direct-to-consumer genetic testing (DTC GT) and salient ethical issues, as well as an analysis of the impact of the recently adopted Regulation on In Vitro Diagnostic Medical Devices (IVD) on DTC GT. DTC GT companies currently employ new testing approaches, report on wide spectrum of conditions, and target new groups of consumers. Such activities raise ethical issues including the questionable analytic and clinical validity of tests, the adequacy of informed consent, potentially misleading advertising, testing in children, research uses and commercialization of genomic data. The recently adopted IVD Regulation may limit the offers of predisposition DTC GT in the EU market.Keywords: direct-to-consumer genetic testing, genetic testing, consumer genomics, consumer genetics, informed consent, genetic counselling, IVD regulation 1 Many of the tests discussed herein involve generating the DNA sequence for much if not all of the genome, therefore it could be considered more accurate to use the term genomic. However, for the purposes of this article, we will be using the word 'genetic' referring both to genetic and genomic testing and services. DTC genetic testing and related services2 This article focuses mainly on health-related testing, excluding testing with other main purposes such as ancestry and paternity. However, it is important to note that ancestry test results may reveal health-related information to consumers, given associations between genetic ancestry and disease risks, press coverage of these relations and interest of the consumers in these issues [85]. Furthermore, the web-based interpretation services can provide health-related information on the basic of raw data received in ancestry genetic testing, which is discussed in the following sections of this article. (2015) revealed that the market of health-related DTC GT has grown significantly in the last decade reaching over 100 companies [6]. Considering that these searchers were performed in English, the total number of companies offering DTC GT may be assumed to be even larger.Importantly, not only has the number of companies grown in recent years, but their offer has expanded regarding the scope of the tests, technologies used, and the target audiences of the tests. (almost) all the DNA present in cells, whilst whole exome sequencing provides sequence of all protein coding regions of DNA; in both cases the amount of genetic information obtained is unprecedented. Once sequenced, the exome or genome can then be analysed for specific, defined purpose(s) (e.g. using targeted gene approach where only a subset of genes ...

show abstract

Section: Current Offer Of Dtc Gt -Expanded Scope Audience and New Tementioning

confidence: 99%

mentioning

confidence: 99%

Current Ethical and Legal Issues in Health-Related Direct-To-Consumer Genetic Testing

2017

View full text Add to dashboard Cite

show abstract

“…Several researchers have discussed the potential privacy and security risks associated with DTC genetic testing such as the possibility of re-identification of de-identified DNA data and lack of clarity in privacy policies of companies in how DNA samples and data will be handled [31][36] [40]. Sharing of DNA data with pharmaceutical organizations [14] and law enforcement [29] [47] has raised concerns about privacy risks for consumers.…”

Section: Privacy Concerns About Dtc Genetic Testingmentioning

confidence: 99%

Do I Spit or Do I Pass?

Grandhi

Plotnick

2022

Proc. ACM Hum.-Comput. Interact.

View full text Add to dashboard Cite

This study explores privacy concerns perceived by people with respect to having their DNA tested by direct-to-consumer (DTC) genetic testing companies such as 23andMe and Ancestry.com. Data collected from 510 respondents indicate that those who have already obtained a DTC genetic test have significantly lower levels of privacy and security concerns than those who have not obtained a DTC genetic test. Qualitative data from respondents of both these groups show that the concerns are mostly similar. However, the factors perceived to alleviate privacy concerns are more varied and nuanced amongst those who have obtained a DTC genetic test. Our data suggest that privacy concerns or lack of concerns are based on complex and multiple considerations including data ownership, access control of data and regulatory authorities of social, political and legal systems. Respondents do not engage in a full cost/benefit analysis of having their DNA tested.

show abstract

“…Genome data privacy has thus been a concern in both research 3.5. Public genomes and follow-up research and commercial contexts [Nature, 2013, Phillips, 2015, and controlledaccess sharing for genome data research is common (e.g. as performed by the United States Database of Genotypes and Phenotypes, dbGaP), while commercial groups often promise privacy for individual-level genetic data.…”

Section: Genomic Data Privacy and Accessmentioning

confidence: 99%

Communicating Personal Genomic Information to Non-experts: A New Frontier for Human-Computer Interaction

Shaer

Nov

Westendorf

et al. 2017

FNT in Human–Computer Interaction

View full text Add to dashboard Cite

Recent advances in genetic testing and Internet technologies have led to a dramatic increase in the access non-experts have to their own personal genomic data. Such data are complex and sensitive, involve multiple dimensions of uncertainty, and can have substantial implications on individuals' behavior, choices, and well-being. Personal genomic data are also unique because unlike other personal data, which might change frequently, genomic data are largely stable during a person's lifetime; it is their interpretation and implications that change over time as new medical research exposes relationships between genes and health. Future progress in genetic research and technologies is likely to further increase the availability of interactive personal genomic information to non-experts. This trend raises technological, ethical, and regulatory concerns related to how people make sense of, engage with, and rely on their personal genomic data. Such concerns are not only of paramount importance for health professionals and policymakers, but are also a pressing issue for human-computer interaction (HCI) research. HCI tools, methods, and practices can help make genomic information more accessible and understandable to non-experts. We argue that the complexity, importance, and personal relevance of this type of information makes understanding, informing, and empowering non-experts' interaction with personal genomics a key challenge that lies ahead for the HCI community. In this article, we explore the roles HCI can play in helping nonexperts contribute, understand, engage with, and share their personal genomic information. This article is also a call-to-action for those of us interested in the intersection of personal informatics and HCI, and, more broadly, in facilitating non-expert interaction with large amounts of complex, personal, and uncertain information.

show abstract

Genomic Privacy and Direct-to-Consumer Genetics: Big Consumer Genetic Data -- What's in that Contract?

Cited by 13 publications

References 6 publications

Current Ethical and Legal Issues in Health-Related Direct-To-Consumer Genetic Testing

Current Ethical and Legal Issues in Health-Related Direct-To-Consumer Genetic Testing

Do I Spit or Do I Pass?

Communicating Personal Genomic Information to Non-experts: A New Frontier for Human-Computer Interaction

Contact Info

Product

Resources

About