Establishing the International Genetic Discrimination Observatory

Joly, Yann; Dalpé, Gratien; Dupras, Charles; Bévière-Boyer, Bénédicte; Paor, Aisling de; Moreno, Palmira Granados; Ho, Calvin Wai-Loon; Ho, Chih-hsing; Cathaoir, Katharina Ó; Kato, Kazuto; Kim, Hannah; Song, Lingqiao; Minssen, Timo; Otlowski, Margaret; Prince, Anya; Nair, Athira P.S.; Hoyweghen, Ine Van; Voigt, Torsten H.; Yamasaki, Chisato; Bombard, Yvonne

doi:10.1038/s41588-020-0606-5

Cited by 25 publications

(15 citation statements)

References 26 publications

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“…In general, the widespread availability of genetic data and the increasing insights into how genetic factors are associated with observed differences between people creates new challenges for policy making across various domains, including insurance markets, labor markets, personalized medicine, and reproductive technologies. In many of these areas, societies and policy makers will have to make difficult and complex trade-offs involving the protection of human rights including respect for autonomy, dignity, privacy, the right to science, the right to know or not to know about genetic results, as well as the feasibility of certain forms of insurance or possible improvements in health and well-being (Joly et al 2020). One of the authors of the current study, Koellinger, recently wrote a policy report for the European Commission that reviews some of these challenges for policy making.…”

Section: 4mentioning

confidence: 99%

Genetic Fortune: Winning or Losing Education, Income, and Health

et al. 2020

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Section: 4mentioning

confidence: 99%

Genetic Fortune: Winning or Losing Education, Income, and Health

et al. 2020

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“…It scales well with the size of the central database ( Figure 2), on current hardware that will only get faster, and most importantly, it gives the agent in the field or local office, the ability to destroy an exonerated profile that has yielded no incriminating match. Whether they are instructed to do so or not is a civil rights matter that each country must resolve for itself 11,12,26,27 . The importance of our work is in showing that accurate practical implementations to enable these fundamental rights are already doable.…”

Section: Discussionmentioning

confidence: 99%

“…With today's technology, local police stations 7 and even agents in the field 8 can generate a suspect's DNA profile to search against central criminal DNA databases in an impressive minutes 9,10 . At the same time, the increased prominence of DNA-based forensics opens up new avenues for misuse including social control and racial profiling 11,12 .…”

Section: Introductionmentioning

confidence: 99%

Innocent until proven guilty: Privacy-preserving search over a central CODIS criminal database from the field

Blindenbach

Jagadeesh

Bejerano

et al. 2020

Preprint

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The presumption of innocence (i.e., the principle that one is considered innocent until proven guilty) is a cornerstone of the criminal justice system in many countries, including the United States. DNA analysis is an important tool for criminal investigations1. In the U.S. alone, it has already aided in over half a million investigations using the Combined DNA Index System (CODIS) and associated DNA databases2. CODIS includes DNA profiles of crime scene forensic samples, convicted offenders, missing persons and more. The CODIS framework is currently used by over 50 other countries3 including much of Europe, Canada, China and more. During investigations, DNA samples can be collected from multiple individuals who may have had access to, or were found near a crime scene, in the hope of finding a single criminal match4. Controversially, CODIS samples are sometimes retained from adults and juveniles despite not yielding any database match4–6. Here we introduce a cryptographic algorithm that finds any and all matches of a person’s DNA profile against a CODIS database without revealing anything about the person’s profile to the database provider. With our protocol, matches are immediately identified as before; however, individuals who do not match anything in the database retain their full privacy. Our novel algorithm runs in 40 seconds on a CODIS database of 1,000,000 entries, enabling its use to privately screen potentially-innocent suspects even in the field.

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“…One last, but crucial challenge is the need to inform women about the potential risk of discrimination on the basis of genetic and other predictive health data along with existing legal protections [70]. The focus of the Canadian Genetic Non-Discrimination Act S-201 (2017), expressed in the terms used and definition included in the act, is on genetic tests and their results.…”

Section: Socio-ethical and Legal Issuesmentioning

confidence: 99%

Personalized Risk Assessment for Prevention and Early Detection of Breast Cancer: Integration and Implementation (PERSPECTIVE I&I)

Brooks

Nabi

Andrulis

et al. 2021

JPM

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Early detection of breast cancer through screening reduces breast cancer mortality. The benefits of screening must also be considered within the context of potential harms (e.g., false positives, overdiagnosis). Furthermore, while breast cancer risk is highly variable within the population, most screening programs use age to determine eligibility. A risk-based approach is expected to improve the benefit-harm ratio of breast cancer screening programs. The PERSPECTIVE I&I (Personalized Risk Assessment for Prevention and Early Detection of Breast Cancer: Integration and Implementation) project seeks to improve personalized risk assessment to allow for a cost-effective, population-based approach to risk-based screening and determine best practices for implementation in Canada. This commentary describes the four inter-related activities that comprise the PERSPECTIVE I&I project. 1: Identification and validation of novel moderate to high-risk susceptibility genes. 2: Improvement, validation, and adaptation of a risk prediction web-tool for the Canadian context. 3: Development and piloting of a socio-ethical framework to support implementation of risk-based breast cancer screening. 4: Economic analysis to optimize the implementation of risk-based screening. Risk-based screening and prevention is expected to benefit all women, empowering them to work with their healthcare provider to make informed decisions about screening and prevention.

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Establishing the International Genetic Discrimination Observatory

Cited by 25 publications

References 26 publications

Genetic Fortune: Winning or Losing Education, Income, and Health

Genetic Fortune: Winning or Losing Education, Income, and Health

Innocent until proven guilty: Privacy-preserving search over a central CODIS criminal database from the field

Personalized Risk Assessment for Prevention and Early Detection of Breast Cancer: Integration and Implementation (PERSPECTIVE I&I)

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