{"title":"消费者遗传学：知情同意怎么办？","authors":"Matt Artz, Doug Henry, C. S. Mena","doi":"10.17730/1938-3525-82.4.394","DOIUrl":null,"url":null,"abstract":"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.","PeriodicalId":47620,"journal":{"name":"Human Organization","volume":"97 1","pages":""},"PeriodicalIF":0.5000,"publicationDate":"2023-11-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"CONSUMER GENETICS: WHAT ABOUT INFORMED CONSENT?\",\"authors\":\"Matt Artz, Doug Henry, C. S. Mena\",\"doi\":\"10.17730/1938-3525-82.4.394\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"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.\",\"PeriodicalId\":47620,\"journal\":{\"name\":\"Human Organization\",\"volume\":\"97 1\",\"pages\":\"\"},\"PeriodicalIF\":0.5000,\"publicationDate\":\"2023-11-17\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Human Organization\",\"FirstCategoryId\":\"90\",\"ListUrlMain\":\"https://doi.org/10.17730/1938-3525-82.4.394\",\"RegionNum\":4,\"RegionCategory\":\"社会学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"ANTHROPOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Human Organization","FirstCategoryId":"90","ListUrlMain":"https://doi.org/10.17730/1938-3525-82.4.394","RegionNum":4,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"ANTHROPOLOGY","Score":null,"Total":0}
引用次数: 0
摘要
随着 "直接面向消费者的基因技术"（Direct-to-Consumer Genetics）的迅猛发展，人们越来越担心消费者的健康数据（通常被认为是机密数据）可能会被滥用。公司在竞争激烈的市场中交换客户的 DNA 并将其货币化，通过消费者必须签署的复杂法律合同获得同意。然而，根据人种学数据，我们发现这种同意很少是 "知情 "的。特别令人担忧的问题包括缺乏合同知识、对潜在利益和风险的误解、隐私以及基因知识的匮乏。
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.
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