Papers by Palmira Granados Moreno
EpiShare is an open science project involving the International Human Epigenome Consortium (IHEC)... more EpiShare is an open science project involving the International Human Epigenome Consortium (IHEC) and ENCODE, developing tools and APIs to increase accessibility of epigenomic data. It does so by using and contributing to standards established by the Global Alliance for Genomics and Health (GA4GH). Here, we present EpiShare's recent initiatives and latest tools releases. First, we performed an in-depth study of the relevant legislation, ethical standards, and best practice documents to develop the Data Privacy Assessment Tool for Health (D-PATH). D-PATH is a unique tool to ensure that EpiShare's data sharing activities meet the applicable ethical, legal, professional requirements. While the current version is taking into account the particular needs of EpiShare (physically located in Quebec while processing data from Canadian and international cohorts), D-PATH could be transposed to other data sharing projects, as we plan on expanding it to account for laws and policies from...
Presentation prepared for FORCE11, Montreal October 11 and 12, 2018
Trends in Genetics, 2021
Genetic discrimination (GD) is the differential or unfair profiling of an individual on the basis... more 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. It shows how GD can take many forms in today's rapidly evolving society.
FACETS, 2019
Open science can significantly influence the development and translational process of precision m... more Open science can significantly influence the development and translational process of precision medicine in Canada. Precision medicine presents a unique opportunity to improve disease prevention and healthcare, as well as to reduce health-related expenditures. However, the development of precision medicine also brings about economic challenges, such as costly development, high failure rates, and reduced market size in comparison with the traditional blockbuster drug development model. Open science, characterized by principles of open data sharing, fast dissemination of knowledge, cumulative research, and cooperation, presents a unique opportunity to address these economic challenges while also promoting the public good. The Centre of Genomics and Policy at McGill University organized a stakeholders’ workshop in Montreal in March 2018. The workshop entitled “Could Open be the Yellow Brick Road to Precision Medicine?” provided a forum for stakeholders to share experiences and identify...
Journal of Law and the Biosciences, 2017
ABSTR ACT Family reunification is one of the main forms of immigration in many countries. To regu... more ABSTR ACT Family reunification is one of the main forms of immigration in many countries. To regulate this process, countries implement measures to prevent cases of fraud, to improve procedural efficiency, and to facilitate integration. One of these measures is the use of DNA testing to confirm a biological link between the sponsor and the applicants. The use of DNA testing has been considered a valuable option due to its accuracy, but it has also raised social , legal, and ethical concerns. Whether the use of DNA testing could be justified is contingent on the way the test itself is implemented. †
Frontiers in Medicine, 2017
Public-private partnerships (PPPs) have been increasingly used to spur and facilitate innovation ... more Public-private partnerships (PPPs) have been increasingly used to spur and facilitate innovation in a number of fields. In healthcare, the purpose of using a PPP is commonly to develop and/or provide vaccines and drugs against communicable diseases, mainly in developing or underdeveloped countries. With the advancement of technology and of the area of genomics, these partnerships also focus on large-scale genomic research projects that aim to advance the understanding of diseases that have a genetic component and to develop personalized treatments. This new focus has created new forms of PPPs that involve information technology companies, which provide computing infrastructure and services to store, analyze, and share the massive amounts of data genomic-related projects produce. In this article, we explore models of PPPs proposed to handle, protect, and share the genomic data collected and to further develop genomic-based medical products. We also identify the reasons that make these models suitable and the challenges they have yet to overcome. To achieve this, we describe the details and complexities of MSSNG, International Cancer Genome Consortium, and 100,000 Genomes Project, the three PPPs that focus on large-scale genomic research to better understand the genetic components of autism, cancer, rare diseases, and infectious diseases with the intention to find appropriate treatments. Organized as PPP and employing cloud-computing services, the three projects have advanced quickly and are likely to be important sources of research and development for future personalized medicine. However, there still are unresolved matters relating to conflicts of interest, commercialization, and data control. Learning from the challenges encountered by past PPPs allowed us to establish that developing guidelines to adequately manage personal health information stored in clouds and ensuring the protection of data integrity and privacy would be critical steps in the development of future PPPs.
Medical Law International, 2015
With the progress in bioinformatics, genomics, and epidemiology, biobanks, as repositories of pop... more With the progress in bioinformatics, genomics, and epidemiology, biobanks, as repositories of populations’ biological samples as well as of personal and medical information, are becoming an essential research tool. Despite the potential benefits biobanks may bring and the options presented by some of the current biobanks’ consent policies, there remain ethical concerns regarding the autonomy and dignity of research participants if consent is not fully informed as dictated in the terms of traditional informed consent. This article aims at providing an overview of the approaches taken by the main international norms with respect to informed and broad consent and how well these norms are integrated by biobanks or biobank consortia. We conclude that broad consent could be an important tool to achieve the benefits of large-scale biobanks projects. If it is to be accepted, its regulation and implementation need to be mindful of the participant’s dignity and autonomy and sensitive to the n...
Journal of International Migration and Integration, 2016
Countries have adopted different laws, policies, and practices that allow immigration officers to... more Countries have adopted different laws, policies, and practices that allow immigration officers to request in certain cases DNA tests to confirm biological relationships in the context of family reunification. In Canada, Citizenship and Immigration Canada has adopted a policy of suggesting DNA testing only as a last
Reference Module in Biomedical Sciences
Journal of Personalized Medicine, 2021
The success of risk-stratified approaches in improving population-based breast cancer screening p... more The success of risk-stratified approaches in improving population-based breast cancer screening programs depends in no small part on women’s buy-in. Fear of genetic discrimination (GD) could be a potential barrier to genetic testing uptake as part of risk assessment. Thus, the objective of this study was twofold. First, to evaluate Canadian women’s knowledge of the legislative context governing GD. Second, to assess their concerns about the possible use of breast cancer risk levels by insurance companies or employers. We use a cross-sectional survey of 4293 (age: 30–69) women, conducted in four Canadian provinces (Alberta, British Colombia, Ontario and Québec). Canadian women’s knowledge of the regulatory framework for GD is relatively limited, with some gaps and misconceptions noted. About a third (34.7%) of the participants had a lot of concerns about the use of their health information by employers or insurers; another third had some concerns (31.9%), while 20% had no concerns. T...
Authors Yann Joly and Clarissa Allen have contributed equally to this article and can both be con... more Authors Yann Joly and Clarissa Allen have contributed equally to this article and can both be considered first author. Palmira Granados Moreno has contributed substantially to the research, writing, editorial revision and development of tables for the article. Acknowledgements: Funding for this paper was provided by the Ministère du Développement Économique, Innovation et Exportation (MDEIE) and Le Fonds de recherche du Québec-Santé (FRQS). We have no conflicts of interest to report.
Journal of Personalized Medicine
Technological innovations including risk-stratification algorithms and large databases of longitu... more Technological innovations including risk-stratification algorithms and large databases of longitudinal population health data and genetic data are allowing us to develop a deeper understanding how individual behaviors, characteristics, and genetics are related to health risk. The clinical implementation of risk-stratified screening programmes that utilise risk scores to allocate patients into tiers of health risk is foreseeable in the future. Legal and ethical challenges associated with risk-stratified cancer care must, however, be addressed. Obtaining access to the rich health data that are required to perform risk-stratification, ensuring equitable access to risk-stratified care, ensuring that algorithms that perform risk-scoring are representative of human genetic diversity, and determining the appropriate follow-up to be provided to stratification participants to alert them to changes in their risk score are among the principal ethical and legal challenges. Accounting for the gr...
Nature Medicine
Polygenic risk scores (PRSs) aggregate the many small effects of alleles across the human genome ... more Polygenic risk scores (PRSs) aggregate the many small effects of alleles across the human genome to estimate the risk of a disease or disease-related trait for an individual. The potential benefits of PRSs include cost-effective enhancement of primary disease prevention, more refined diagnoses and improved precision when prescribing medicines. However, these must be weighed against the potential risks, such as uncertainties and biases in PRS performance, as well as potential misunderstanding and misuse of these within medical practice and in wider society. By addressing key issues including gaps in best practices, risk communication and regulatory frameworks, PRSs can be used responsibly to improve human health. Here, the International Common Disease Alliance's PRS Task Force, a multidisciplinary group comprising expertise in genetics, law, ethics, behavioral science and more, highlights recent research to provide a comprehensive summary of the state of polygenic score research, as well as the needs and challenges as PRSs move closer to widespread use in the clinic.
Journal of Personalized Medicine
Risk-stratified screening for breast cancer (BC) is increasingly considered as a promising approa... more Risk-stratified screening for breast cancer (BC) is increasingly considered as a promising approach. However, its implementation is challenging and needs to be acceptable to women. We examined Canadian women’s attitudes towards, comfort level about, and willingness to take part in BC risk-stratified screening. We conducted an online survey in women aged 30 to 69 years in four Canadian provinces. In total, 4293 women completed the questionnaire (response rate of 63%). The majority of women (63.5% to 72.8%) expressed favorable attitudes towards BC risk-stratified screening. Most women reported that they would be comfortable providing personal and genetic information for BC risk assessment (61.5% to 67.4%) and showed a willingness to have their BC risk assessed if offered (74.8%). Most women (85.9%) would also accept an increase in screening frequency if they were at higher risk, but fewer (49.3%) would accept a reduction in screening frequency if they were at lower risk. There were fe...
Nature Genetics, 2020
Genetic discrimination is one of the most pervasive challenges resulting from research and develo... more 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 comprising a network of researchers and stakeholders from more than 19 jurisdictions.
ABSTR ACT Family reunification is one of the main forms of immigration in many countries. To regu... more ABSTR ACT Family reunification is one of the main forms of immigration in many countries. To regulate this process, countries implement measures to prevent cases of fraud, to improve procedural efficiency, and to facilitate integration. One of these measures is the use of DNA testing to confirm a biological link between the sponsor and the applicants. The use of DNA testing has been considered a valuable option due to its accuracy, but it has also raised social , legal, and ethical concerns. Whether the use of DNA testing could be justified is contingent on the way the test itself is implemented. †
Public–private partnerships (PPPs) have been increasingly used to spur and facilitate innovation ... more Public–private partnerships (PPPs) have been increasingly used to spur and facilitate innovation in a number of fields. In healthcare, the purpose of using a PPP is commonly to develop and/or provide vaccines and drugs against communicable diseases, mainly in developing or underdeveloped countries. With the advancement of technology and of the area of genomics, these partnerships also focus on large-scale genomic research projects that aim to advance the understanding of diseases that have a genetic component and to develop personalized treatments. This new focus has created new forms of PPPs that involve information technology companies, which provide computing infrastructure and services to store, analyze, and share the massive amounts of data genomic-related projects produce. In this article, we explore models of PPPs proposed to handle, protect, and share the genomic data collected and to further develop genomic-based medical products. We also identify the reasons that make these models suitable and the challenges they have yet to overcome. To achieve this, we describe the details and complexities of MSSNG, International Cancer Genome Consortium, and 100,000 Genomes Project, the three PPPs that focus on large-scale genomic research to better understand the genetic components of autism, cancer, rare diseases, and infectious diseases with the intention to find appropriate treatments. Organized as PPP and employing cloud-computing services, the three projects have advanced quickly and are likely to be important sources of research and development for future personalized medicine. However, there still are unresolved matters relating to conflicts of interest, commercialization, and data control. Learning from the challenges encountered by past PPPs allowed us to establish that developing guidelines to adequately manage personal health information stored in clouds and ensuring the protection of data integrity and privacy would be critical steps in the development of future PPPs.
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Papers by Palmira Granados Moreno