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

The intersection of healthcare and technology is a rapidly growing area. One thriving field at this intersection involves obtaining, processing, and storing genetic data. While the benefits have been great, genetic information can reveal a great deal about individuals and their families. And the information that can be conveyed from genetic data appears limitless and is constantly growing and changing. Many entities have begun storing, processing, and sharing genetic data on a very large scale. This creates many privacy concerns that the current regulatory framework does not account for. The line between patient data and consumer data is blurred; many entities are interested in obtaining genetic data with varied interests. In the direct-to-consumer genetic testing market, consumers pay to send private companies their DNA samples in exchange for a trivial amount of information about their ancestry and health risks. But health data obtained and processed by a company are subjected to far less stringent privacy regulations than health data obtained and processed at a doctor’s office or hospital. This Comment summarizes some of the current genetic privacy problems in United States laws and examines the EU’s recently adopted GDPR for a possible solution. A GDPR-style regulation could provide more consistency, give individuals more control, and protect against future unknown uses.

Download Full-text

Attacks on genetic privacy via uploads to genealogical databases

eLife ◽

10.7554/elife.51810 ◽

2020 ◽

Vol 9 ◽

Cited By ~ 6

Author(s):

Michael D Edge ◽

Graham Coop

Keyword(s):

Genetic Information ◽

Genetic Data ◽

Proof Of Concept ◽

Genetic Privacy ◽

Direct To Consumer ◽

Multiple Datasets ◽

Genome Wide ◽

Genetics Services

Direct-to-consumer (DTC) genetics services are increasingly popular, with tens of millions of customers. Several DTC genealogy services allow users to upload genetic data to search for relatives, identified as people with genomes that share identical by state (IBS) regions. Here, we describe methods by which an adversary can learn database genotypes by uploading multiple datasets. For example, an adversary who uploads approximately 900 genomes could recover at least one allele at SNP sites across up to 82% of the genome of a median person of European ancestries. In databases that detect IBS segments using unphased genotypes, approximately 100 falsified uploads can reveal enough genetic information to allow genome-wide genetic imputation. We provide a proof-of-concept demonstration in the GEDmatch database, and we suggest countermeasures that will prevent the exploits we describe.

Download Full-text

EXPRESS: Genetic Data: Potential Uses and Misuses in Marketing

Journal of Marketing ◽

10.1177/0022242920980767 ◽

2020 ◽

pp. 002224292098076 ◽

Cited By ~ 1

Author(s):

Remi Daviet ◽

Gideon Nave ◽

Jerry Wind

Keyword(s):

Genetic Research ◽

Genetic Data ◽

Business Strategies ◽

Future Research ◽

Ethical Challenges ◽

Biological Mechanisms ◽

Direct To Consumer ◽

Potential Impact ◽

Study Designs ◽

Privately Owned

Advances in molecular genetics have led to the exponential growth of the direct-to-consumer genetic testing industry, resulting in the assembly of massive privately-owned genetic databases. This article explores the potential impact of this new data type on the field of marketing. Drawing on findings from behavioral genetic research, we propose a framework that incorporates genetic influences into existing consumer behavior theory, and use it to survey potential marketing uses of genetic data. Applications include business strategies that rely on genetic variants as bases for segmentation and targeting, creative uses that develop consumers’ sense of community and personalization, use of genetically informed study designs to test causal relations, and refinement of consumer theory by uncovering biological mechanisms underlying behavior. We further evaluate ethical challenges related to autonomy, privacy, misinformation and discrimination that are unique to the use of genetic data and are not sufficiently addressed by current regulations. We conclude by proposing an agenda for future research.

Download Full-text

Applying bioethical principles for directing investment in precision medicine

Clinical Ethics ◽

10.1177/1477750919897380 ◽

2019 ◽

Vol 15 (1) ◽

pp. 23-28

Author(s):

Alison Finall ◽

Kerina Jones

Keyword(s):

Precision Medicine ◽

Mutational Analysis ◽

Genetic Data ◽

Shared Decision ◽

Malignant Tumours ◽

Hub And Spoke ◽

Oncological Treatment ◽

Direct To Consumer ◽

Limited Health ◽

And Training

The concept of precision medicine aims to tailor treatment based on data unique to the patient. An example is the use of genetic data from malignant tumours to select the most appropriate oncological treatment. The competing interests of utilitarianism and egoism create dilemmas for decisions regarding investment in precision medicine. The need to balance the perceived rights and needs of individuals against those of society as a whole is an on-going challenge in the distribution of limited health service resources. There is need for proper planning, organisation and investment into precision medicine to cope with the consequences of both direct-to-consumer and healthcare-directed genetic testing for genetic counselling, therapeutics and diagnostic networks. Consideration needs to be given to providing adequate time and training to allow for meaningful shared decision-making with patients and there is a strong case in support of a hub-and-spoke model to provide rapid, solid tumour genetic mutational analysis to prevent patients missing out on beneficial treatments.

Download Full-text

Direct-to-consumer raw genetic data and third-party interpretation services: more burden than bargain?

Genetics in Medicine ◽

10.1038/s41436-018-0097-2 ◽

2018 ◽

Vol 21 (3) ◽

pp. 539-541 ◽

Cited By ~ 23

Author(s):

Tia Moscarello ◽

Brittney Murray ◽

Chloe M. Reuter ◽

Erin Demo

Keyword(s):

Genetic Data ◽

Third Party ◽

Direct To Consumer

Download Full-text

Evaluation of Phenotype Classification Methods for Obesity Using Direct to Consumer Genetic Data

Intelligent Computing Theories and Application - Lecture Notes in Computer Science ◽

10.1007/978-3-319-63312-1_31 ◽

2017 ◽

pp. 350-362 ◽

Cited By ~ 1

Author(s):

Casimiro Aday Curbelo Montañez ◽

Paul Fergus ◽

Abir Hussain ◽

Dhiya Al-Jumeily ◽

Mehmet Tevfik Dorak ◽

...

Keyword(s):

Genetic Data ◽

Classification Methods ◽

Direct To Consumer ◽

Phenotype Classification

Download Full-text

Policy and regulatory implications of the new frontier of forensic genomics: direct-to-consumer genetic data and genealogy records

Current Issues in Criminal Justice ◽

10.1080/10345329.2018.1560588 ◽

2019 ◽

Vol 31 (2) ◽

pp. 194-216 ◽

Cited By ~ 8

Author(s):

Nathan Scudder ◽

Dennis McNevin ◽

Sally F. Kelty ◽

Christine Funk ◽

Simon J. Walsh ◽

...

Keyword(s):

Genetic Data ◽

Direct To Consumer ◽

New Frontier

Download Full-text

Multiple Measures Reveal The Value of Both Race And Geographic Ancestry For Self-Identification

10.1101/701698 ◽

2019 ◽

Cited By ~ 1

Author(s):

Vincent Damotte ◽

Chao Zhao ◽

Chris Lin ◽

Eric Williams ◽

Yoram Louzoun ◽

...

Keyword(s):

United States ◽

Family History ◽

Biomedical Research ◽

Genetic Data ◽

The United States ◽

Genetic Ancestry ◽

Multiple Measures ◽

Direct To Consumer

AbstractThere is long-standing tension regarding whether and how to use race or geographic ancestry in biomedical research. We examined multiple self-reported measures of race and ancestry from a cohort of over 100,000 U.S. residents alongside genetic data. We found that these measures are often non-overlapping, and that no single self-reported measure alone provides a better fit to genetic ancestry than a combination including both race and geographic ancestry. We also found that patterns of reporting for race and ancestry appear to be influenced by participation in direct-to-consumer genetic ancestry testing. Our results demonstrate that there is a place for the language of both race and geographic ancestry as we seek to empower individuals to fully describe their family history in research and medicine.One Sentence SummarySelf-identification in the United States according to both racial and geographic terms best reflects genetic ancestry in individuals.

Download Full-text