Medical College of Wisconsin
CTSICores SearchResearch InformaticsREDCap

All your data (effectively) belong to us: data practices among direct-to-consumer genetic testing firms. Genet Med 2017 May;19(5):513-520

Date

09/23/2016

Pubmed ID

27657678

DOI

10.1038/gim.2016.136

Scopus ID

2-s2.0-85021729287   43 Citations

Abstract

PURPOSE: Direct-to-consumer genetic testing (DTC-GT) has become a convenient method to help people to understand their genetic makeup. Owing in part to concerns regarding confidentiality, privacy, and secondary use of data, professional and government bodies created guidelines to promote transparency among these companies. Using a comprehensive and systematic approach, this study assessed DTC-GT company compliance with international transparency guidelines.

METHODS: A framework analysis was performed on 30 DTC-GT health and/or ancestry websites identified using a US-based online search strategy during the summer of 2015. A codebook was developed from a synthesis of relevant guidelines from seven DTC-GT guideline documents and applied to each website.

RESULTS: Although most companies met guidelines related to transparency regarding security protocols, storage procedures, and third-party disclosures, few met guidelines regarding sharing risks from data disclosures. Additionally, few companies disclosed how long data would be kept for services or research. Use of data for research was frequently mentioned only in privacy policies and terms of service documents, and only two-thirds of companies required an additional consent to use consumer data for health-related research.

CONCLUSION: Our analysis shows that DTC-GT companies do not consistently meet international transparency guidelines related to confidentiality, privacy, and secondary use of data.Genet Med advance online publication 22 September 2016.

Author List

Laestadius LI, Rich JR, Auer PL

Author

Paul L. Auer PhD Professor in the Institute for Health and Equity department at Medical College of Wisconsin




MESH terms used to index this publication - Major topics in bold

Confidentiality
Direct-To-Consumer Screening and Testing
Disclosure
Genetic Privacy
Genetic Testing
Guidelines as Topic
Humans
Informed Consent
Internet