Download Privacy risks of direct to consumer genetic testing

Privacy risks of direct to
consumer genetic testing
OPC Contributions Grant 2013-2014
Emily Christofides and Kieran O’Doherty
University of Guelph
Direct-to-consumer genetic
testing (DTC GT)
• Previously, genetic testing provided only through health care
system
• Often, mandatory genetic counseling
• Recently, commercial companies are offering genetic testing
directly to consumers
• Often health related
• Paradoxically, advertised FOR
privacy
Current debates & regulations
• Tests vary greatly in quality
• analytical validity
• clinical validity
• clinical utility
• Agreement on need for regulation;
• Disagreement on how this should be done
• Varying responses across jurisdictions
Genetic information
• Generally seen as requiring special protection
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Denial of health insurance
Denial of financial products
Denial of employment
Other forms of discrimination
• Social and ethical challenges well recognised in academic
literature
• Genetic counselling
• Genetics/genomics research
• Human tissue biobanking
Genetic information and DTC
GT companies
• Transfer of genetic material and information incidental to
primary purpose of transaction
• Exchange of service for fee
• In the process of conducting business DTC GT companies
accumulate very detailed personal information about
customers
Our OPC project
1. How do Direct-to-Consumer Genetic Testing (DTCGT)
companies communicate privacy risk information to
customers?
2. What do customers understand of their risks?
Review of DTCGT Company
Websites
• Compiled up-to-date list of companies providing DTC genetic
testing
• Because of on-line nature of tests, examined ANY company
that was accessible to Canadians
• Exclusions
• Incomplete or inaccessible websites
• Services directed towards physicians or researchers
• Total of 86 companies examined
Categories of tests
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Health tests (primary focus)
Traits & talents
Ancestry & genealogy
Relationship & paternity
Forensics & infidelity
Prenatal testing
Other
Assessment of privacy
information
• What privacy related information do companies make
available to consumers?
• Do they have a privacy policy?
• If not, are they making privacy information available elsewhere?
• Evaluation based on
• Past research
• Most comprehensive privacy policies (e.g., 23andMe)
Evaluation criteria
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Accessibility of Policy
Completeness of the Privacy Information
Content of the Privacy Information: Access
Content of the Privacy Information: Disposal
Content of the Privacy Information: Consequences
Content of the Privacy Information: Secondary Use
Content of the Privacy Information: Recourse
• Ranking range: “excellent”, “good”, “fair”, “poor”
“Health” tests
• 29 companies
• Drug response tests (e.g., risk of severe side effects to Statins)
• Disease predispositions (e.g., diabetes, Parkinson’s) and
carrier status (e.g., cystic fibrosis).
• Telomere length tests
• Diet and nutritional tests
• For example, 23andMe advertises that it offers over 240 tests
of health conditions (e.g. predisposition to celiac disease) and
over 40 tests for inherited conditions (e.g. carrier status for
cystic fibrosis).
Health rankings
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Excellent – 4
Good – 6
Fair – 11
Poor – 8
Key findings
• Of the companies that do post privacy policies, many do not
talk about genetic privacy
• Customer information intended to be used for secondary
purposes
• Of particular concern:
• Companies allowing for ‘discreet’ samples