Ancestry and Privacy: It’s all relative.

Genetic Alliance Privacy and Progress Webinar Series “Ancestry and WGS: Other Privacy Concerns?”

Dec. 10, 2013

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Dr. Jennifer K. Wagner, J.D., Ph.D., Center for the Integration of Genetic Healthcare Technologies (PennCIGHT)

My work is supported by Grant No. K99HG006446 from the NHGRI and by the University of Pennsylvania’s Perelman School of Medicine, Division of Translational Medicine and Human Genetics, Center for the Integration of Genetic Healthcare Technologies. The content of this presentation is solely my own responsibility and does not necessarily represent the official views of the NHGRI, UPenn, or any other person or organization.

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Overview •  Ancestry Tests •  Privacy and confidentiality •  Legal Perspective on Privacy Rights •  Whose privacy interests? •  Privacy or Something Else?

We all share common ancestry

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•  Continental and Biogeographical Ancestry

•  Descent Groups, Clans, and Lineages

•  Sociopolitical rules –  Unilineal, ambilineal,

and bilateral descent –  Hypodescent and

Hyperdescent rules

“…I note the obvious differences between each sort and type, but we are more alike, my friends than we are unalike…” ~ Excerpt from Maya Angelou’s The Human Family

Image taken from Royal et al. 2010. Inferring Genetic Ancestry: Opportunities, Challenges, and Implications. Am J Hum Genet 86: 661-673 (Figure 1, at 664)

Genealogies, Pedigrees, & Family Histories

•  Relatives –  Consanguinal (“blood

issue”) •  Lineal •  Collateral

–  Affinal

•  Family –  Family of Orientation –  Family of Procreation

•  Kin

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•  Genealogical Ancestry –  Expected levels of shared biological ancestry

•  Genetic/omic Ancestry –  Realized (or measured) levels of shared biological ancestry

Hypodescent Hyperdescent

•  The child of parents of different ethnicities or races will be determined by assigning the child to the ethnicity or race of the more socially subordinate* parent.

•  Example: One-drop rule,

Virginia Racial Purity Act 1924

•  The child of parents of different ethnicities or races will be determined by assigning the child to the ethnicity or race of the more socially dominant* parent.

•  Example: blood quantum rules,

1934 Indian Reorganization Act

“Today we inhabit a legal regime that is the accretion of centuries of myth and amnesia.” ~ Daniel Sharfstein

For more information, read Ian Haney-Lopez, White by Law: The Legal Construction of Race

Are researchers and participants or companies and consumers speaking the same language?

Image taken from Lee et al. The Illusive Gold Standard in Genetic Ancestry Testing. Science 2009; 325: 38-39

Privacy ≠ Confidentiality •  Privacy – relates to a person, controlling access to one’s self.

•  Confidentiality – relates to treatment of data or information shared

from one person to another in a particular fiduciary relationship, e.g., •  attorney-client, •  physician-patient, •  researcher-research participant, •  priest-penitent, and •  spouse-spouse

7 See, e.g., http://research.uci.edu/ora/hrpp/privacyAndConfidentiality.htm#privacy

Privacy Rights in the US •  The Warren & Brandeis Article

–  Famous 1890 argument urged judicial recognition of a common law right to privacy.

–  Privacy is a principle of “inviolate personalty”

•  Constitutional Basis for Protecting Privacy –  First Amendment

•  Freedom of Expression & Association –  Fourth Amendment

•  Search & Seizure protections –  Fifth or Fourteenth Amendment

•  Due Process protections

•  Four Realms of Privacy Law –  Informational privacy –  Physical privacy –  Decisional privacy –  Proprietary privacy

US Supreme Court Associate Justice

1916-1939 Image from http://en.wikipedia.org/wiki/Louis_Brandeis

Legal Perspective on Privacy •  Four Realms of Privacy – Informational – Physical – Decisional – Proprietary

•  Civil Complaints for Invasion of Privacy – Intrusion Upon Seclusion – Public Disclosure of Private Facts – False Light – Appropriation

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Surreptitious Testing •  A party (other than law enforcement) ordering or

performing a genetic test or analysis on DNA samples of another without their knowledge or consent. –  Examples:

•  spit from a cigarette butt, chewing gum, or soda can or hair from a brush to test identity, paternity, or other relationships;

•  clothing of an distrusted partner to test fidelity;

•  Banned in the UK since 2006 (Human Tissue Act of 2004)

10 Image from http://www.abajournal.com/magazine/article/gene_swipe_few_dna_labs_know_whether_chromosomes_are_yours_or_if_you_stole_/

There is no specifically recognized federal right to “genetic privacy”

in the US yet.

11 Image from http://www.geneticsandsociety.org/img/original/biobank-privacy_1.jpg

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Image adapted from “Privacy and Progress in Whole Genome Sequencing.” Presidential Commission for the Study of Bioethical Issues (October 2012) P. 121.

Comprehensive Limited None on point

A Glimpse at the States

Landscape of Laws & Regulations GINA

EEOC

DHHS OCR

CLIA

CMS

FDCA

FDA

FTCA

FTC

Attorney General

Federal law establishes the floor, not the ceiling.

Plus a patchwork of - Specific state statutes - Generally applicable federal laws - Generally applicable state laws

Image from http://en.wikipedia.org/wiki/United_States_courts_of_appeals

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Figure from “Privacy and Progress in Whole Genome Sequencing.” Presidential Commission for the Study of Bioethical Issues (October 2012) P. 61.

In the US, privacy of personal information is addressed contextually rather than with one universally applicable privacy law.

Privacy interests of whom?

•  Individual Consumer/Participant/Patient •  Relatives (as individuals) •  Family (as an collective entity or unit) •  Community •  Ethnic Group •  Population

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Informed Consent = A Waiver of Privacy •  But consent from whom? –  An individual –  A group of individuals –  An entire group as a collective entity

•  If an individual, which individual(s)? –  The one from whom a biospecimen (cheek swab, saliva,

blood sample, saliva) can be obtained? –  The many about whom the information relates in

probabilistic ways?

16 “Relative Futility” (Woodage, 2010)

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Sources of Ancestry Information •  Informants (known and unknown) •  Vital Records (birth, death, marriage, etc.) •  Public Information (newspapers, digital archives) •  DNA tests Interests of “root-seeker” to access information may be in conflict with privacy interests of those sought.

Beware of Genetic

Exceptionalism.

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Each genomic locus has its own evolutionary past. Different DNA ancestry tests have potential to reveal different information (because they assay different loci) and information about different individuals (because they assay types of loci inherited uni-parentally or bi-parentally). Beware of genetic determinism & non-distributive generalizations.

Overarching Goal: Protecting Privacy or something else? •  Other Concerns –  Commodification –  Exploitation –  Stigmatization –  Discrimination –  Cultural Harms –  Genetic Stalking –  “re-identification”

risks

•  Case Studies –  Genetic Research and the

resulting dispute between Havasupai Tribe and Arizona State University scientists •  See Vorhaus, Genomics Law

Report, April 21, 2010 –  Development of special rules

for genomic research involving HeLa cell lines. •  See Wagner, Genomics Law

Report, August 27, 2013

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DNA Ancestry & Identity •  Objective self-fashioning

–  J Dumit. Picturing Personhood: Brain Scans and Biomedical Identity. Princeton, NJ: Princeton UP. 2003

–  J Dumit. Is it Me or My Brain: Depression and Neuroscientific Facts. J Med Humanities. 2003; 24(1/2): 35-47.

•  Affiliative self-fashioning –  A Nelson. Bio science: genetic genealogy testing and the pursuit of

African ancestry. Soc Stud Sci. 2003; 38(5):759-783.

•  A “double entendre of recreation and re-creation…” (Lee, 2013)

•  “ethnostress” (Cajete, 1994) •  “ethnic options” (Waters, 2001)

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Closing Remarks •  Privacy interests are relative and often competing with other interests.

–  E.g., An individual’s right to access information about himself/herself vs. other individuals’ rights to restrict access to information about themselves.

•  Privacy interests are variable. There is inter- and intra-individual, temporal, and spatial variability. –  E.g., privacy of information about living vs. deceased persons –  Adoptees and children of assisted reproductive technologies –  Missing persons –  Trafficked persons

•  Sociotechnical architecture affects experiences, attitudes, and awareness (as well as ability to control the flow of information).

•  In shaping our genetic rights, we must consider policies not only focused on privacy but also other interests, such as non-discrimination and equality.

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Suggested Reading •  Dumit J. Is it Me or My Brain: Depression and Neuroscientific Facts. J Med Humanities. 2003; 24(1/2):

35-47. •  Haney-Lopez, I. White by law : the legal construction of race. New York: New York UP. 2006. •  Jonassaint C et al. Regional Differences in Awareness and Attitudes Regarding Genetic Testing for Disease

and Ancestry. Hum Genet. 2010; 128:249-260. DOI: 10.1007/s00439-010-0845-0 •  Lee S. Race, Risk, and Recreation in Personal Genomics: The Limits of Play. Med Anthro Quart. 2013; 00:

1-20. DOI: 10.1111/maq.12059 •  Nelson A. Bio science: genetic genealogy testing and the pursuit of African ancestry. Soc Stud Sci. 2003;

38(5):759-783. •  Nissenbaum HF. Privacy in context: technology, policy, and the integrity of social life. Stanford, CA:

Stanford Law Books. 2010. •  Parthasarathy S. Assessing the social impact of direct-to-consumer genetic testing: understanding

sociotechnical architectures. Genet Med. 2010; 12:544-547. •  Royal CD et al. Inferring genetic ancestry: opportunities, challenges, and implications. Am J Hum Genet

2010; 86 (5):661-73. DOI: 10.1016/j.ajhg.2010.03.011. •  TallBear K. Genomic articulations of Indigeneity. Soc Stud Sci. 2013; 43: 509. DOI:

10.1177/0306312713483893. •  Wagner JK and Weiss KM. Attitudes on DNA Ancestry Tests. Hum Genet. 2012; 131(1):41-56. DOI

10.1007/s00439-011-1034-5. •  Wagner JK et al. Tilting at Windmills No Longer: A Data Driven Discussion of DTC DNA Ancestry Tests.”

Genet Med. 2012; 14(6):586-93. doi:10.1038/gim.2011.77 •  Woodard T. Relative Futility: Limits to Genetic Privacy Because of the Inability to Prevent Disclosure of

Genetic Information by Relatives. Minn L Rev. 2010; 95: 682.

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