Consumer Genetics
What About Informed Consent
Bibliographic Data
| ID | 2497325 |
|---|---|
| Authors | M Artz (0000-0002-3822-1429, InterScience (United States), corresponding author), D Henry (0000-0003-3627-9974, InterScience (United States)), Carolina Severiche Mena (0000-0002-4121-6137, InterScience (United States)) |
| Year | 2023 |
| Volume | 82 |
| Issue | 4 |
| Pages | 394-404 |
| Publication date | 2023-12-01 |
| Peer Reviewed | Yes |
| Open Access | No |
| Type | ARTICLE |
| Venue | Human Organization (JOURNAL) |
| Journal identifiers | ISSN: 0018-7259 • E-ISSN: 1938-3517 |
| Publisher | Informa UK Limited (PUBLISHER • GB) |
| DOI | 10.17730/1938-3525-82.4.394 |
| OpenAlex | W4388824913 |
| Language | EN |
| References cited | 30 |
With the dramatic rise in Direct-to-Consumer Genetics has come increasing concern for the potential abuse of consumer health data, often presumed confidential. Companies exchange and monetize their customers’ DNA in a competitive marketplace, obtaining consent through complex legal contracts that consumers must sign. However, drawing on ethnographic data, we show that this consent is rarely “informed.” Particular concerns include lack of contractual knowledge, misunderstanding of the potential benefits and risks, privacy, and low genetic literacy
Alternative medicine · Business · Confidentiality · Environmental health · Genetic data · Informed consent · Internet privacy · Political science · Biomedical Ethics and Regulation · Genetically Modified Organisms Research · Law · Law, AI, and Intellectual Property · Medicine
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| Citation velocity | historical |
|---|---|
| Highly cited | No |