• Corpus ID: 73496320

Who Knows What, and When?: A Survey of the Privacy Policies Proffered by U.S. Direct-to-Consumer Genetic Testing Companies.

@article{Hazel2018WhoKW,
  title={Who Knows What, and When?: A Survey of the Privacy Policies Proffered by U.S. Direct-to-Consumer Genetic Testing Companies.},
  author={James W Hazel and Christopher Slobogin},
  journal={Cornell journal of law and public policy},
  year={2018},
  volume={28 1},
  pages={
          35-66
        }
}
Direct-to-consumer genetic testing (DTC-GT) companies have proliferated in the past several years. Based on an analysis of genetic material submitted by consumers, these companies offer a wide array of services, ranging from providing information about health and ancestry to identification of surreptitiously-gathered biological material sent in by suspicious spouses. Federal and state laws are ambiguous about the types of disclosures these companies must make about how the genetic information… 

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References

SHOWING 1-10 OF 13 REFERENCES

Is Privacy Policy Language Irrelevant to Consumers?

This article reports the results of two experiments in which large, census-weighted samples of Americans read short excerpts from Facebook’s, Yahoo’s, and Google’s privacy policies, which are at

Third party interpretation of raw genetic data: an ethical exploration

It is found that many of the ethical concerns previously described in DTC-GT also applied to TPI websites, including inadequate informed consent, questionable clinical validity and utility, and lack of medical supervision.

A comparative study of online privacy policies and formats

It was found participants were not able to reliably understand companies' privacy practices with any of the formats, and participants were faster with standardized formats but at the expense of accuracy for layered policies, and Privacy Finder formats supported accuracy more than natural language for harder questions.

The Failure of Fair Information Practice Principles

Modern data protection law is built on "fair information practice principles." At their inception in the 1970s and early 1980s, FIPPS were broad, aspirational, and included a blend of substantive

Regulatory controls for direct-to-consumer genetic tests: a case study on how the FDA exercised its authority

This case study is the first case study to examine in detail how FDA has set standards for the marketing approval of DTC genetic tests.

GINA, genetic discrimination, and genomic medicine.

Has the Genetic Information Nondiscrimination Act succeeded in its twin missions of preventing discrimination and alleviating public fears about the potential for discrimination on the basis of

Strategies for reducing online privacy risks: Why consumers read (or don't read) online privacy notices

It is found that reading privacy notices is related to concern for privacy, positive perceptions about notice comprehension, and higher levels of trust in the notice, suggesting that effective privacy notices serve an important function in addressing risk issues related to e-commerce.

and a Look at Property Rights: Why You May Be Your Brother's Keeper, 19 TEX. WESLEYAN L. REV

  • 2012

System of Oversight for Genetic Testing: A Report from the Secretary's Advisory Committee on Genetics, Health and Society, 5 PERSONALIZED MED

  • 2005

Milne & Mary J . Culnan , Strategies for Reducing Online Privacy Risks : Why Consumers Read ( or Don ’ t Read ) Online Privacy Notices , 18 J

  • 2016