Ma'n H. Zawati

Ma'n H. Zawati
McGill University | McGill · Centre of Genomics and Policy (CGP)

LL.B. LL.M. Ph.D. (D.C.L.)

About

268
Publications
19,320
Reads
How we measure 'reads'
A 'read' is counted each time someone views a publication summary (such as the title, abstract, and list of authors), clicks on a figure, or views or downloads the full-text. Learn more
1,589
Citations
Introduction
Ma’n H. Zawati (LL.B., LL.M., Ph.D. (D.C.L.)) is an Assistant Professor at McGill University's Faculty of Medicine and the Executive Director of the Centre of Genomics and Policy in the Department of Human Genetics at McGill University. He is also an Associate Member of McGill’s Biomedical Ethics Unit. His research concentrates on the legal, ethical and policy dimensions of health research and clinical care, with a special focus on biobanking, data sharing, professional liability, and the use of novel technologies (e.g. mhealth apps, WGS, WES) in both the clinical and research settings. Dr. Zawati is funded by CIHR, Genome Canada, and Genome Quebec. His work is interdisciplinary, drawing together perspectives from law, ethics, bioinformatics, genomics, and policy.
Additional affiliations
September 2019 - present
McGill University
Position
  • Professor (Assistant)
January 2016 - present
McGill University
Position
  • Managing Director
June 2009 - September 2019
McGill University
Position
  • Academic Associate
Education
September 2011 - May 2019
McGill University
Field of study
  • Law
September 2009 - June 2011
Université de Montréal
Field of study
  • Law
September 2004 - June 2007
Université de Montréal
Field of study
  • Law

Publications

Publications (268)
Article
Full-text available
This paper summarizes the results of a 31-country qualitative study of expert perspectives on the regulation of international “direct-to-participant” (DTP) genomic research. We outline how the practice of directly recruiting participants for genomic studies online complicates ethics and regulatory considerations for the return of individual researc...
Article
International biomedical research, in which projects span borders and engage participants from multiple countries, has increased substantially during the last several decades. Despite the proven value of large, geographically, and ethnically diverse studies, further advancements are being impeded by the burden of submitting separate, and often nume...
Article
Full-text available
COVID-19 was declared to be a pandemic in March 2020 by the World Health Organization. Timely sharing of viral genomic sequencing data accompanied by a minimal set of contextual data is essential for informing regional, national, and international public health responses. Such contextual data is also necessary for developing, and improving clinical...
Article
Genetic services have historically been housed in tertiary care, requiring referral, which can present access barriers. While integrating genetics into primary care could facilitate access, many primary care physicians lack genomics expertise. Integrating genetic counsellors (GCs) into primary care could theoretically address these issues, but litt...
Chapter
Over the next two Chapters, I aim to demonstrate that the concept of reciprocity provides a plausible grounding for relational autonomy, a conception of autonomy that will need to be respected by researchers when disclosing information to participants during the consent process. More importantly, I argue that such reciprocity-based relational auton...
Chapter
In Chapter 1, I demonstrated that an individualistic conception of autonomy is at the core of the jurisprudential interpretation of the duty to inform in Canada. One consequence of this is that the duty to inform in research is more exacting than in the clinic setting. Participants, accordingly, have a right to receive “full and frank disclosure of...
Chapter
I argue that these shortcomings of individual autonomy transcend the clinical setting and have important implications for population biobanks. More concretely, I focus on two specific problems with individual autonomy in the population biobank setting. The first turns on how individual autonomy fails to recognize the complexities of benefit conside...
Chapter
In this chapter, I will argue that the jurisprudential interpretation of the duty to inform of researchers in Canada is foundationally based on an individualistic conception of autonomy. In presenting this view, I will first give an overview of the evolution of the medical duty to inform and its underlying principles. In this context, I use the wor...
Chapter
Despite having adopted requirements that apply in all nontherapeutic research, the case law presented in the previous Chapter was explicitly based on a single category of research projects: the clinical trial. Population biobanks are, as we will see, a distinct category and raise distinct concerns. Whether in their structure, ultimate objectives, o...
Chapter
In this chapter, I demonstrate that, despite certain limitations, reciprocity is the most suitable conceptual grounding for relational autonomy in population biobanks. The result of which, as I will show, is a more appropriate conception of autonomy that is capable of theoretically framing the disclosure of information during the consent process. T...
Article
Full-text available
Background In the Canadian Alliance for Healthy Hearts and Minds (CAHHM) cohort, participants underwent magnetic resonance imaging (MRI) of the brain, heart, and abdomen, that generated incidental findings (IFs). The approach to managing these unexpected results remain a complex issue. Our objectives were to describe the CAHHM policy for the manage...
Article
Importance The number of adolescents who are diagnosed with a genetic disorder is increasing as genome sequencing becomes the standard of clinical diagnostic testing. However, the experience of receiving a diagnosis of a genetic condition has not been extensively studied in adolescents. Objective To identify how adolescents with a genetic conditio...
Preprint
Full-text available
Genetic discrimination (GD) is the differential or unfair profiling of an individual based on 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 GD can take many forms in today’s rapidly evolving society.
Article
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.
Article
The implementation of precision medicine and next-generation sequencing technologies in the field of oncology is a novel approach being more widely studied and used in cases of high-risk primary and recurrent malignancies. Leukemias are the second most common cause of cancer-related mortality in children and the sixth most in adults. Relapsed leuke...
Article
Full-text available
Genetic counseling is a fast-growing profession in Canada. Yet, despite its growth, genetic counseling lacks legal recognition in the majority of Canadian provinces. Legal recognition serves to regulate professions, including genetic counseling, that if not properly regulated, expose the public to the risk of harm. Under Canadian law, there are thr...
Article
Full coverage of the cost of clinical genetic testing is not always available through public or private insurance programs, or a public healthcare system. Consequently, some patients may be faced with the decision of whether to finance testing out-of-pocket (OOP), meet OOP expenses required by their insurer, or not proceed with testing. A scoping r...
Article
Full-text available
SARS-CoV-2 infection causing the novel coronavirus disease 2019 (COVID–19) has been responsible for more than 2.8 million deaths and nearly 125 million infections worldwide as of March 2021. In March 2020, the World Health Organization determined that the COVID–19 outbreak is a global pandemic. The urgency and magnitude of this pandemic demanded im...
Article
Biomedical research based on the sharing and use of ever larger volumes of samples and data is increasingly becoming an essential component of scientific discovery. The success of biobanking and genomic research is dependent on the broad sharing of resources for use by investigators. However, important ethical challenges need to be addressed for th...
Article
Full-text available
Introduction Childhood overweight and obesity (OWO) is a primary global health challenge. Childhood OWO prevention is now a public health priority in China. The Sino-Canadian Healthy Life Trajectories Initiative (SCHeLTI), one of four trials being undertaken by the international HeLTI consortium, aims to evaluate the effectiveness of a multifaceted...
Article
Full-text available
Children with rare and common diseases now undergo whole genome sequencing (WGS) in clinical and research contexts. Parents sometimes request access to their child’s raw genomic data, to pursue their own analyses or for onward sharing with health professionals and researchers. These requests raise legal, ethical, and practical issues for profession...
Chapter
The last fifteen years have seen the emergence of Public Health Genomics (PHG), a multidisciplinary field related to the effective and responsible translation of genome-based knowledge and technologies to improve population health. While at the beginning the main concern of PHG was that genetic/genomic applications should be evaluated rigorously be...
Article
Genetics and genomics are playing increasingly important roles in the Canadian health care system. With their specialized training in medical genetics and counselling, genetic counsellors have come to occupy more comprehensive roles in the provision of health care services. Despite these important advances, the majority of Canadian provinces have y...
Preprint
BACKGROUND Medical care and health research are jointly undergoing significant changes brought about by the Internet [1,2,3]. New online tools, apps, and programs are helping to facilitate unprecedented levels of data sharing and collaboration, potentially enabling more precisely targeted treatment and rapid research translation [4,5,6]. Patient po...
Article
Background This study aims to identify a novel potential use for web portals in health care and health research: their adoption for the purposes of rapidly sharing health research findings with clinicians, scientists, and patients. In the era of precision medicine and learning health systems, the translation of research findings into targeted thera...
Article
As genetics becomes increasingly integrated into all areas of health care and the use of complex genetic tests continues to grow, the clinical genetics workforce will likely face greatly increased demand for its services. To inform strategic planning by health-care systems to prepare to meet this future demand, we performed a scoping review of the...
Article
Full-text available
Effective responses to the COVID-19 pandemic require novel solutions for research and responsible data sharing. Biobanking presents itself as a key priority in furthering our understanding of COVID-19. In this article, we propose a tripartite approach to consent to create resources for research relating to COVID-19. The approach aims to link three...
Article
Introduction: Biospecimens and associated data are invaluable tools in Genomics and Personalized Health (GAPH) research and can aid in the discovery of disease etiology and the development of therapeutics. Objective: To examine the experiences of patients invited to a particular GAPH study, Spectrometry in TIA Rapid Assessment (SpecTRA), and to ex...
Article
Full-text available
Background Research in the field of genomics and genetics has evolved in recent years and so has the demand of consumers who are increasingly interested in genomic prediction of diseases and various traits. The aim of this study is to identify genetic service delivery models, policies governing the use of genomics medicine, and measures to evaluate...
Article
In this paper, we outline the policy implications of mobile health research conducted at the international level. We describe the manner in which such research may have an international dimension and argue that it is not likely to be excluded from conventionally applicable international regulatory tools. We suggest that closer policy attention is n...
Chapter
This chapter surveys law and policy approaches to the return of individual genomic findings in health research and the oversight role of Institutional Review Boards (IRBs). We review legal principles influencing return, including fiduciary duties, the duty to rescue, and the right to know (or not). We also identify core elements of applicable laws...
Article
Medical practitioners are increasingly adopting a personalized medicine (PM) approach involving individually tailored patient care. The Personalized Prevention of Chronic Diseases (PRECeDI) consortium project, funded within the Marie Skłodowska Curie Action (MSCA) Research and Innovation Staff Exchange (RISE) scheme, had fostered collaboration on P...
Article
Full-text available
Over the past decade, smartphone technology has become increasingly sophisticated and ubiquitous. Modern smartphones, now owned by more than three quarters of Canadians and 94% of millennials, perform an array of functions that are potentially useful in the health care context, such as tracking fitness data, enabling health record sharing, and prov...
Preprint
Our understanding of the clinical significance of genomic data is rapidly evolving. The meaning of a patient’s test results can therefore change over time. Reanalysis of genomic data over time and patient recontact offer an opportunity to improve patient health. But are physicians legally responsible to do so? Professional associations worldwide ar...
Preprint
UNSTRUCTURED Over the past decade, smartphone technology has become increasingly sophisticated and ubiquitous. Modern smartphones, now owned by more than three quarters of Canadians and 94% of millennials, perform an array of functions that are potentially useful in the health care context, such as tracking fitness data, enabling health record shar...
Article
Background: Understanding the complex interaction of risk factors that increase the likelihood of developing common diseases is challenging. The Canadian Partnership for Tomorrow Project (CPTP) is a prospective cohort study created as a population-health research platform for assessing the effect of genetics, behaviour, family health history and e...
Article
As biobanking research in low- and middle-income countries (LMICs) continues to grow, novel legal and policy considerations have arisen. Also, while an expansive literature has developed around these issues, the views and concerns of individual researchers in these contexts have been less actively studied. These meeting notes aim to contribute to t...
Article
Full-text available
We conducted a document analysis that explored publication ethics and authorship in the context of population biobanks from both a theoretical (e.g. normative documents) and practical (e.g. biobank-specific documentation) perspective. The aim was to provide an overview of the state of authorship attribution in population biobanks and attempt to fil...
Data
Authorship approaches: Normative documents. (DOCX)
Data
Authorship approaches and mechanisms: Biobank-specific documentation. (DOCX)
Data
Concept map outlining coding categories and sub-categories. (TIFF)
Article
Full-text available
Mobile health applications are increasingly being used as tools of medicine. Outside of the clinic, some of these applications may contribute to diagnoses made absent a physician's care. We argue that this contravenes reservations of diagnosis to healthcare professionals in the law of two Canadian provinces: Quebec and Ontario. On the one hand, the...
Article
Full-text available
Background: Since the launch of ResearchKit on the iOS platform in March 2015 and ResearchStack on the Android platform in June 2016, many academic and commercial institutions around the world have adapted these frameworks to develop mobile app-based research studies. These studies cover a wide variety of subject areas including melanoma, cardiomy...
Chapter
Samples and data from population studies are stored for long periods of time, and can be accessed by national and international researchers to further their own studies and contribute to their understanding of the impact of a number of factors (e.g., environment, lifestyle) on common diseases and their progression. Part 2 of this Chapter discusses...