Publications et nouvelles récentes

Genomics Beyond Healthcare: future uses and considerations of genomic science by Government Office for Science and George Freeman MP

A new wide-ranging report Genomics Beyond Health published today by the Government Office for Science investigates how genomics could play a part in our lives in the future, from sport to education and tackling crime.... Lire la suite

Points to consider to avoid unfair discrimination and the misuse of genetic information: A statement of the American College of Medical Genetics and Genomics (ACMG) Laurie H. Seaver, George Khushf, Nancy M.P. King, Dena Matalon, Kunal Sanghavi, Matteo Vatta, Kristi Wees; on behalf of the ACMG Social, Ethical and Legal Issues Committee

This statement is designed primarily as an educational resource for medical geneticists and other clinicians to help them provide quality medical services. Adherence to this statement is completely voluntary and does not necessarily assure a successful medical outcome. This statement should not be considered inclusive of all proper procedures and tests or exclusive of other procedures and tests that are reasonably directed to obtaining the same results. In determining the propriety of any specific procedure or test, clinicians should apply their own professional judgment to the specific clinical circumstances presented by the individual patient or specimen.... Lire la suite

California Enacts New Privacy Law for Genetic Data by Julia K. Radish, Harrison Schafer

California’s governor recently signed SB 41 into law. The bill enacts the Genetic Information Privacy Act (GIPA). The governor rejected a similar bill last year over concerns about COVID-19 public health efforts. To address that concern, this bill exempts tests used to diagnose whether an individual has a specific disease.... Lire la suite

Genetic testing and insurance implications: Surveying the US general population about discrimination concerns and knowledge of the Genetic Information Nondiscrimination Act (GINA) by Anya E. R. Prince, Wendy R. Uhlmann, Sonia M. Suter, Aaron M. Scherer

Globally, due to public concerns of genetic discrimination, some countries and insurance industries have adopted policies restricting insurer use of genetic information, such as the US Genetic Information Nondiscrimination Act (GINA). This study reports on a combined analysis of two surveys assessing public knowledge of GINA and concerns of genetic discrimination in a diverse US sample (N = 1616). We focus on whether occupation, genetic testing history, and insurance status are correlated with knowledge of GINA or concerns of discrimination. While bivariate analysis identified some populations with higher subjective/objective knowledge and concern relative to counterparts, multivariable regression identified very few significant associations with outcomes of interest. Overall, this study highlights a lack of awareness and understanding of GINA, even among subpopulations hypothesized to have greater knowledge of the law. These findings have implications for the broader debate around insurer use of genetic information.... Lire la suite

The A-GLIMMER project is looking for Australian consumers' views and perspectives on the implementation of the genetic and insurance moratorium. by Jane Tiller and Paul Lacaze

Many people are concerned about the use of genetic information by life insurers. Researchers from Monash University are keen to understand the views and experiences of Australian consumers. These include people who have had genetic testing as well as people who are eligible but choose not to have genetic testing. The findings of this research will contribute to a report to the Australian government regarding the current regulation of life insurers. Your participation will assist with gathering critical data on the views and experiences of consumers.
1. Please consider completing this important survey, whatever experience you have had with life insurance and genetic testing. You can remain anonymous if you wish.
2. Please also consider forwarding this survey link to your family members who may have had or considered having a test.
You can access the survey here: In the beginning, you will find more information about the study and an explanatory statement.
For any queries regarding this research, don't hesitate to contact the research coordinator, Jane Tiller, on

Legal and Ethical Challenges in the Construction of China's Biobanks by Jiajv Chen, Jiayu Huang, Xuekai Xie

China has no special legislation on biobanks, and it regulates these banks by several different laws and regulations. In the past 15 years, China's biobanks have collected a large number of biological samples. The law gives many institutions the right to store and use biological samples; however, due to the absence of government regulation, lack of ethical norms, and unclear legal provisions, the risks related to biosafety are rising. In terms of informed consent, China's current legislation clearly defines the scope and standard of “informed consent,” but the corresponding boundaries are still vague, and there are loopholes in practical operation. In terms of privacy and confidentiality, Chinese laws do not specify the ownership of genetic information. In the event of genetic risk, Chinese doctors often tell the family members of patients about genetic information. In terms of cross-border supervision of biological samples, the Chinese government not only regulates the entry of biological samples, but also controls the exit of biological samples. In recent years, the corresponding law enforcement and punishment efforts have increased. In terms of trust, China's biobanks often rely on hospitals. Against the background of tense doctor-patient relationships, biological sample donors do not trust hospitals, which is unfortunate because biological sample donors often donate out of their trust in doctors. In terms of benefit sharing, China's legal system still lacks clear provisions, and there are disputes about the mode and subject of benefit sharing. In China's future legislative revision(s), the above aspects should be improved, the ethical traditions of China's “patriarchal system” should be considered, and a biobanking system in line with China's national conditions should be formulated.... Lire la suite

A step forward, but still inadequate: Australian health professionals’ views on the genetics and life insurance moratorium by Jane M Tiller, Louise A Keogh, Aideen M McInerney-Leo, Andrea Belcher, Kristine Barlow-Stewart, Tiffany Boughtwood, Penny Gleeson, Grace Dowling, Anya Prince, Yvonne Bombard1, Yann Joly, Martin Delatycki, Ingrid M Winship, Margaret Otlowski, Paul Lacaze

In 2019, the Australian life insurance industry introduced a partial moratorium (ban) limiting the use of genetic test results in life insurance underwriting. The moratorium is industry self-regulated and applies only to policies below certain financial limits (eg, $500 000 of death cover).... Lire la suite

The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination by Yann Joly, Katherine Huerne, Mykhailo Arych, Yvonne Bombard, Aisling De Paor, Edward S.Dove, Palmira Granados Moreno, Calvin W.L.Ho, Chih-Hsing Ho, Ine Van Hoyweghen, Hannah Kim, Audrey Lebret, Timo Minssen, Katharina Ó. Cathaoir, Anya E.R.Prince, Athira P.S.Nair, Margaret Otlowski, Michael S. Pepper, Rob Sladek, Lingqiao Song, Torsten H. Voigt, Ma’n H. Zawati, Gratien Dalpé, on behalf of the Genetic Discrimination Observatory (GDO)

Genetic discrimination (GD) is the differential or unfair profiling of an individual on the basis of genetic data. This article summarizes the actions of the Genetic Discrimination Observatory (GDO) in addressing GD and recent developments in GD since late 2020. ... Lire la suite

Genetic discrimination: introducing the Asian perspective to the debate by Hannah Kim, Calvin W. L. Ho, Chih-Hsing Ho, P. S. Athira, Kazuto Kato, Leonardo De Castro, Hui Kang, Richard Huxtable, Hub Zwart, Jonathan Ives, Ilhak Lee, Yann Joly & So Yoon Kim

Our article aims to provide a comprehensive portrayal of how seven Asian jurisdictions have sought to address the challenge of genetic discrimination (GD) by presenting an analysis of the relevant legislation, policies, and practices.... Lire la suite

The Supreme Court of Canada’s Reference re Genetic Non-Discrimination Act by Yann Joly, Gratien Dalpé, Hortense Gallois, Bartha Maria Knoppers, Daniel Turp

Genetic discrimination has been a public concern for decades but supported by limited evidence. Following a reference from the Quebec government, the Court of Appeal of Quebec ... Lire la suite

States Continue to Step in to Safeguard Genetic Information by Julia Kadish

Utah’s governor recently signed into law SB 227, creating the Genetic Information Privacy Act (GIPA). The law, which is anticipated to go into effect in May, is aimed at protecting genetic data collected from direct-to-consumer genetic testing companies. ... Lire la suite

Employees’ Views and Ethical, Legal, and Social Implications Assessment of Voluntary Workplace Genomic Testing by Kunal Sanghavi, W. Gregory Feero, Debra J.H. Mathews, Anya E.R. Prince, Lori Lyn Price, Edison T. Liu1, Kyle B. Brothers, J. Scott Roberts, and Charles Lee

Employers have begun to offer voluntary workplace genomic testing (wGT) as part of employee wellness benefit programs, but few empirical studies have examined the ethical, legal, and social implications (ELSI) of wGT. ... Lire la suite

Normalising life at risk of Huntington’s disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination by Annet Wauters & Ine Van Hoyweghen

Studies in the sociology of genetics have shown how living with a predisposition to a genetic disorder often comes with significant psycho-social burdens and struggles. One of these struggles is the fear of genetic discrimination. Despite genetic non-discrimination regulations, research shows people still worry about being subjected to genetic discrimination.... Lire la suite

ESHG warns against misuses of genetic tests and biobanks for discrimination purposes by Francesca Forzano, Maurizio Genuardi, Yves Moreau

Medical knowledge is a powerful instrument that is meant for individual and collective good. Since the time of Hippocrates, we have known it should never be abused, even if serious misuses have occurred in modern history. Among the most recent examples of harm is the compulsory collection of DNA samples from ordinary people being carried out by the Chinese authorities in Xinjiang province as part of a programme of surveillance and control ... Lire la suite

Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases by Charles Dupras, Eline M. Bunnik

While the accumulation and increased circulation of genomic data have captured much attention over the past decade, privacy risks raised by the diversification and integration of omics have been largely overlooked. In this paper, we propose the outline of a framework for assessing privacy risks in multi-omic research and databases. Following a comparison of privacy risks associated with genomic and epigenomic data, we dissect ten privacy risk-impacting omic data properties that affect either the risk of re-identification of research participants, or the sensitivity of the information potentially conveyed by biological data. We then propose a three-step approach for the assessment of privacy risks in the multi-omic era. Thus, we lay grounds for a data property-based, ‘pan-omic’ approach that moves away from genetic exceptionalism. We conclude by inviting our peers to refine these theoretical foundations, put them to the test in their respective fields, and translate our approach into practical guidance.... Lire la suite

Should Your DNA Data Be Used to Sell Products? by Gideon Nave, Remi Daviet

Sales of genetic testing kits have skyrocketed since they first appeared on the market in 2013. Now, more than 30 million people have taken these tests, adding a treasure trove of DNA information to enormous datasets that are already being tapped by tech-savvy businesses.... Lire la suite

Data Sanitization to Reduce Private Information Leakage from Functional Genomics by Gamze Gürsoy, Prashant Emani, Charlotte M. Brannon, Otto A. Jolanki, Arif Harmanci, J. Seth Strattan, J. Michael Cherry, Andrew D. Miranker, Mark Gerstein

The generation of functional genomics datasets is surging, because they provide insight into gene regulation and organismal phenotypes (e.g., genes upregulated in cancer). The intent behind functional genomics experiments is not necessarily to study genetic variants, yet they pose privacy concerns due to their use of next-generation sequencing. ... Lire la suite

Japanese insurers’ attitudes toward adverse selection and genetic discrimination: a questionnaire survey and interviews with employees about using genetic test results By Hiroshi Iida & Kori Muto

Since the 1990s, insurance has been the primary field focused on the social disadvantages of using genetic test results because of the concerns related to adverse selection. Although life insurance is popular in Japan, Japan does not currently have any regulations on the use of genetic information and insurers have largely kept silent for decades.... Lire la suite

Genetic testing: Employee perk or privacy hazard? by Scott Roberts

New $3.3 million NIH-funded study will examine ethical, policy implications of workplace genomic testing... Lire la suite

Long-awaited progress in addressing genetic discrimination in the United States by A. C. F. Lewis, R. C. Green and A. E. R. Prince

The US federal Genetic Information Nondiscrimination Act (GINA) protects individuals against much health insurance and employment genetic discrimination, but by design does not protect in other realms.... Lire la suite

More education on the benefits of genetic testing could accelerate its potential by University of Queensland

A study of Queensland health consumers has found most have relatively low levels of understanding and awareness of genetic testing, despite its significant potential to improve health outcomes. ... Lire la suite

CLASP Comments in Opposition to Proposed Rulemaking: Collection and Use of Biometrics by U.S. Citizenship and Immigration Services by Juan Carlos Gomez

The Trump Administration published Proposed Rules in the Federal Register on September 11, 2020. Taken together, the proposed rules would radically change and infringe upon the privacy of immigrants and their U.S. citizen family members, subjecting them to unnecessary surveillance that will lead to further discrimination of immigrants. CLASP firmly opposes the proposed rules in their entirety and submitted these comments on October 13, 2020 calling on USCIS in DHS to withdraw them.... Lire la suite

California Governor vetoes bill to establish the Genetic Information Privacy Act by Hogan Lovells

California’s “Genetic Information Privacy Act” (SB 980), vetoed on September 25, 2020 by Governor Gavin Newsom, would have established obligations for direct-to-consumer (“DTC”) genetic testing companies and others that collect or process genetic information. ... Lire la suite

Genetics and COVID-19: How to Protect the Susceptible By Robert I. Field, Anthony W. Orlando, Arnold J. Rosoff

Along with the potential for breakthroughs in care and prevention, the search for genetic mechanisms underlying the spread and severity of coronavirus disease 2019 (COVID-19) introduces the risk of discrimination against those found to have markers for susceptibility. We propose new legal protections to mitigate gaps in protections under existing laws.... Lire la suite

Reference re Genetic Non-Discrimination Act Supreme Court of Canada

Parliament had the power to make it a crime to force someone to get genetic testing or reveal their test results, the Supreme Court has ruled.... Lire la suite

ABI releases Code on Genetic Testing report by Adam Saville

The report provides a transparent overview of the compliance exercise carried out by the Association of British Insurers (ABI) to assess how the Code is operating, as well as an overview of the key developments in insurance over the last year...... Lire la suite

Strategic Development of Genomic Medicine in Hong Kong Steering Committee on Genomic Medicine of the Hong Kong government

The rapid advancement in genomic medicine has presented huge potential in accurate diagnosis, personalised treatment and efficient surveillance of diseases... Lire la suite

Hong Kong lays out blueprint for future of genomic medicine by Elizabeth Cheung

Steering committee gives eight recommendations on way forward for field that is becoming a critical aspect of health care. It calls for better supervision of tests and says people should not be required to submit test results to insurers to obtain coverage.... Lire la suite

The Answer to a COVID-19 Vaccine May Lie in Our Genes, But... by Ifeoma Ajunwa, Forrest Briscoe

Biotechs and pharma want to protect patients without triggering immune system havoc... Lire la suite

Genetic Discrimination: The Genetic Information Nondiscrimination Act's Impact on Practice and Research by Meghan Underhill-Blazery, Margaret R Klehm

The Genetic Information Nondiscrimination Act of 2008 (GINA) provides federal safeguards to prohibit employer or insurance discrimination based on personal or familial genetic information or conditions.... Lire la suite

BEYOND LOCAL: New DNA test that reveals 'true age' has promise, but ethical pitfalls The Conversation

Epigenetic clocks are a fascinating new technology, but some potential applications are controversial ... Lire la suite

Establishing the International Genetic Discrimination Observatory by Yann Joly, Gratien Dalpé & al.

Genetic discrimination is one of the most pervasive challenges resulting from research and development in human genetics. To collaboratively study and prevent this ethical issue, we established an international Genetic Discrimination Observatory... Lire la suite

Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination by Yann Joly, Charles Dupras, Miriam Pinkesz, Stacey A. Tovino, and Mark A. Rothstein

Genetic discrimination (GD) is consistently associated with research and innovation in genetics. Over recent decades, countries around the world have attempted to address GD using various policy measures.... Lire la suite

Life insurers should not get your DNA by Chris Sprowls

Life insurers should be banned from using genetic testing results to determine rates or coverage, the next House speaker writes.... Lire la suite

A judge said police can search the DNA of 1 million Americans without their consent. What’s next? by Jocelyn kaiser

For the first time, a state judge has forced a public genealogy site, GEDmatch, to allow police to search its entire database of DNA profiles.... Lire la suite

Genetic privacy legislation goes to the SCC by Dale Smith

Legislation to protect Canadians' genetic information is coming before the Supreme Court of Canada. The top court is hearing the case today after the Quebec Court of Appeal found that part of the Act uses the criminal law powers to outlaw genetic discrimination is ultra vires.... Lire la suite

U.S. Government Plans to Collect DNA From Detained Immigrants by Caitlin Dickerson

The Department of Homeland Security said it would begin testing on hundreds of thousands of immigrants in federal detention facilities.... Lire la suite

Revue canadienne de bioéthique "Is Genetic Discrimination Back on the Radar? A Commentary on the Recent Court of Appeal Reference Decision on the Genetic Non- Discrimination Act (GNDA) " by Yann Joly, Gratien Dalpé, Miriam Pinkesz

"In this commentary, we critically review the Quebec Court of Appeal's reference decision to the effect that the Genetic Non-Discrimination Act (GNDA) is unconstitutional"... Lire la suite

"New federal rules limit police searches of family tree DNA databases" by Jocelyn kaiser

"An ancestry database helped police identify Joseph DeAngelo, who faces charges as the Golden State Killer."... Lire la suite

"Will genetic screening of athletes change sport as we know it?" by G. Gregory Haff

"There's little evidence that performance capacity can be predicted based on genes, writes Gregory Haff from Australia's Edith Cowan University."... Lire la suite

"23 and who? Your DNA test results and the law" by Briana Bierschbach

"A journalist visits a website offering DNA testing. Companies that sell DNA tests have hired lobbyists as Minnesota legislators eye regulating who has access to the results."... Lire la suite

"Alzheimer's disease biomarkers: another tool for FAA pilot screening?" by Matthew W Lawrence and Jalayne J Arias

"Research advancements to improve the accuracy of diagnosing Alzheimer's disease (AD) have altered clinicians and researchers' understanding of the disease process. The discovery of amyloid and tau biomarkers as measures of disease pathology supports early identification of disease risk that precedes symptom onset."... Lire la suite

"DNA testing service Vitagene exposed thousands of customer records online for years" by Nico Grant

"DNA testing service Vitagene Inc. left thousands of client health reports exposed online for years, the kind of incident that privacy advocates have warned about as gene testing has become increasingly popular."... Lire la suite

"DNA-testing firms are lobbying to limit your right to genetic privacy" by David Lazarus

"Home DNA testing can be fun. I’ve done it for myself and for my dog. One of us unexpectedly turned out to be 3.1% Italian. The other is mostly Saint Bernard."... Lire la suite

"Discrimination on genetic testing by life insurers ends" by John Collett

"Life insurers are no longer allowed to require applicants for insurance to disclose the results of any genetic tests they may have had after the Financial Services Council, which represents all life insurers operating in Australia, brokered a ban on the practice this week"... Lire la suite

"The genetic-data dystopia we may face" by K.N.C.

"A scene from a play and interview with Ella Road, the author of "The Phlebotomist"... Lire la suite

"Japan's insurance industry takes steps to stop genetic discrimination" by Logan B.

"The Japanese industry is preparing guidelines to make sure insurers can't collect customer DNA. The insurance industry in Japan is getting ready to create guidelines that would stop genetic discrimination by insurers in the country"... Lire la suite

"The questionable ethics of expanding forensic DNA testing" by Benjamin Berkman

"The use of genetic information collected by private companies in criminal investigations raises a number of issues about transparency and privacy"... Lire la suite

"Rwanda sparks human rights concerns in proposing world's first nationwide DNA database" by Wil Crisp

"Rwanda has proposed the world's first country-wide DNA database, a project that will involve collecting samples from all of the country's 12 million citizens in an effort to crack down on crime".... Lire la suite

"FSC to enact binding standard on genetic testing" By Elizabeth McArthur

"The life insurance industry is pushing ahead with the rollout of new rules on genetic testing despite a delay"... Lire la suite

"Vers une discrimination génétique au Canada ?" Par Yann Joly et Gratien Dalpé

"Deux juristes se penchent sur la récente décision de la Cour d'Appel relativement à la Loi sur la Non-Discrimination Génétique (LNDG)"... Lire la suite

"Genetic characteristics: A developing ground of discrimination" By Rachel Devon

"Employers should be mindful of a newly recognized form of discrimination that has captured the attention of legislators and the Canadian public: genetic discrimination"... Lire la suite

"Draft approved on use of patients' gene info amid discrimination fears" Japanese original by Norikazu Chiba

"A suprapartisan group of lawmakers on March 13 approved the draft outline of a bill to promote proper use of patients' gene information in disease treatment and prevention with a brake on genetic discrimination"... Lire la suite

"Les assureurs veulent à tout prix mettre la main sur votre profil génétique" par Jean-Yves Nau

Pour l’heure, en France, la loi protège l'intimité génétique de chacun. Mais la Suisse est sur le point de craquer. Et demain, les assurances trieront-elles leurs clients en fonction de leurs gènes ?.... Lire la suite

"Statement - More needs to be done to protect people from genetic discrimination in Canada" by Marie-Claude Landry, Chief Commissioner of the Canadian Human Rights Commission

Following the Quebec Court of Appeal's opinion concerning the constitutionality of the Genetic Non-Discrimination Act, Marie-Claude Landry, Chief Commissioner of the Canadian Human Rights Commission, issues the following statement: ... Lire la suite

"La discrimination génétique peut aller de l’avant" par Hélène Buzzetti

La loi fédérale interdisant la discrimination génétique est sur le respirateur artificiel. La Cour d’appel du Québec l’a jugée invalide juste avant Noël au motif qu’il revenait aux provinces et non au gouvernement fédéral de légiférer en la matière.... Lire la suite

"Genetic Discrimination: A Reality for Both Residents and Immigrants" by Victor Depois

Genetic Tests Used by Both Insurers and Immigration Officers. Montreal resident Harriet Smith* was in her mid-thirties in 2013 when she got tested for BRCA1 gene mutation for the first time. A pseudonym has been used to protect her employment opportunities and her children from accessing insurance... Lire la suite

"Deportations on the back of consumer genetic tests worry scientists" by Brian Oewns

Canada's border enforcement agency appears to be using genetic tests and DNA ancestry sites to determine country of origin for would-be deportees. Geneticists in Canada are raising concerns about the apparent use of direct-to-consumer genetic tests and ancestry websites by the Canada Border Services Agency (CBSA) to help determine the country of origin for people it wants to deport... Lire la suite

"La discrimination génétique, un phénomène répandu ou pas ?" par Hélène Buzzetti

La discrimination génétique est-elle très répandue ? Les Québécois la craignent-ils et connaissent-ils la nouvelle loi — contestée — visant à l’enrayer ? Ce sont là les questions auxquelles tente de répondre le professeur montréalais Yann Joly en lançant une consultation en ligne sur le sujet... Lire la suite

"L'utilisation des données génétiques promet d'âpres débats au National" par Camille Degott/kkub

La récolte et l'utilisation des données génétiques se trouvent au coeur de la révision de la Loi fédérale sur l’analyse génétique humaine, en débat dès lundi au Conseil national... Lire la suite