Vasiliki (Vaso) Rahimzadeh, PhD is an applied bioethics scholar with research interests at the intersection of precision medicine, data governance and public policy.
Member, Maternal & Child Health Research Institute (MCHRI)
Honors & Awards
Gordon A. Maclachlan Prize for best dissertation in the biological sciences, McGill University (June 2020)
Governor General's Gold Medal, McGill University (June 2020)
David McCutcheon Pediatric Palliative Care Fellowship, McGill University Health Centre (09/2013-09/2014)
McGill Med Star Award, McGill University Faculty of Medicine (05/2019)
Best Poster Prize in Medicine and Public Health, American Association for the Advancement of Science (AAAS) (05/2018)
Vanier Canada Graduate Scholar, Canadian Institutes of Health Research (05/2016-05/2019)
Friends of McGill Fellowship (declined), McGill University (05/2014-05/2015)
Boards, Advisory Committees, Professional Organizations
Trainee representative, Canadian Institutes of Health Research Standing Committee on Ethics (2017 - 2019)
Member, Canadian College of Family Physicians (2018 - Present)
Member, American Society for Bioethics and Humanities (2013 - Present)
Member, Montreal Neurological Institute and Hospital (2017 - 2019)
Phd, McGill University, Family Medicine and Primary Care Research (2019)
MSc, McGill University, Experimental Medicine (2014)
B.S., University of California Berkeley, Microbial Biology (2012)
Mildred Cho, Postdoctoral Faculty Sponsor
A policy Delphi study to validate the key implications of data sharing (KIDS) framework for pediatric genomics in Canada.
BMC medical ethics
2021; 22 (1): 71
BACKGROUND: The highly sensitive nature of genomic and associated clinical data, coupled with the consent-related vulnerabilities of children together accentuate ethical, legal and social issues (ELSI) concerning data sharing. The Key Implications of Data Sharing (KIDS) framework was therefore developed to address a need for institutional guidance on genomic data governance but has yet to be validated among data sharing practitioners in practice settings. This study qualitatively explored areas of consensus and dissensus of the KIDS Framework from the perspectives of Canadian clinician-scientists, genomic researchers, IRB members, and pediatric ethicists.METHODS: Twelve panelists participated in a three-round online policy Delphi to determine the desirability, feasibility, relative importance and confidence of twelve individual statements of the KIDS Framework. Mean and IQR were calculated from panelists' ratings to determine the strength of consensus and polarity. Qualitative content analysis of panelists' written responses was used to assess degree of support. Statements were validated when their combined ratings and qualitative rationales indicated high-moderate consensus (at least 70% agreement across two contiguous categories), low to no polarity (IQRat least1.0) and strong support.RESULTS: Nine original, and one new statement reached consensus. These statements outlined essential elements of the informed consent process, including a realistic evaluation of benefits and risks and assurance of future ethics oversight for secondary data use. Discrepant views on appropriate protections for anonymized and coded i.e. de-identified genomic data were primary sources of dissensus.CONCLUSIONS: The validated statements provide institutions with empirically supported best practices for sharing genomic and associated clinical data involving children from the perspectives of key stakeholders. Concerted efforts to quantify informational risks that can be conveyed to patients and families are further needed to align data sharing policy with stakeholder priorities.
View details for DOI 10.1186/s12910-021-00635-1
View details for PubMedID 34107925
Communication of Pharmacogenomic test results and treatment plans in pediatric oncology: deliberative stakeholder consultations with parents.
BMC palliative care
2021; 20 (1): 15
BACKGROUND: Effective communication in support of clinical decision-making is central to the pediatric cancer care experience for families. A new laboratory derived pharmacogenetic test (LDT) that can diagnose difficult-to-treat brain cancers has been developed to stratify children based on their ability to respond to available treatment; however, the potential implementation of the LDT may make effective communication challenging since it can potentially remove the option for curative treatment in those children identified as non-responders, i.e. those with a catastrophic diagnosis.OBJECTIVE: We solicited the perspectives of parents of children with difficult-to-treat brain cancer on communication preferences surrounding the potential implementation of the LDT in standard care using deliberative stakeholder consultations.METHODS: Eight bereaved parents of children who succumbed to difficult-to-treat brain cancer, and four parents of children currently undergoing treatment for similar cancers attended separate small-group deliberative consultations - a stakeholder engagement method that enables the co-creation of recommendations following the consideration of competing arguments and diverse opinions of parents with different experiences. In the small-group consultations (Phase I), parents discussed four questions about potential communication issues that may arise with the LDT in practice. In Phase II, a total of five parents from both stakeholder groups (4 bereaved and 1 in current treatment) attended a consultation, known as the 'mixed' consultation, with the purpose of co-developing concrete recommendations for implementation of the LDT.RESULTS: Explaining the risks, benefits, and accuracy of the LDT were considered essential to parents. Once an LDT-based diagnosis/prognosis can be made, parents valued honesty, empathy, and clarity in communication. Parents also requested that all results and treatment options be presented to them in measured doses, and in an unbiased manner over the course of several meetings. This communication strategy allowed sufficient time to understand and accept the diagnosis/prognosis, particularly if it was catastrophic. Continuous access to the appropriate psychological and social support or counselling at and post-diagnosis was also strongly recommended.CONCLUSIONS: Deliberants co-created family-centered recommendations surrounding communication issues of the LDT, providing guidance to pediatric oncologists that could implement the test in practice.
View details for DOI 10.1186/s12904-021-00709-2
View details for PubMedID 33435936
Ethics and Informatics in the Age of COVID-19: Challenges and Recommendations for Public Health Organization and Public Policy.
Journal of the American Medical Informatics Association : JAMIA
The COVID-19 pandemic response in the United States has exposed significant gaps in information systems and processes to enable timely clinical and public health decision-making. Specifically, the use of informatics to mitigate the spread of SARS-CoV-2, support COVID-19 care delivery, and accelerate knowledge discovery bring to the forefront issues of privacy, surveillance, limits of state powers, and interoperability between public health and clinical information systems. Using a consensus building process, we critically analyze informatics-related ethical issues in light of the pandemic across three themes: (1) public health reporting and data sharing, (2) contact tracing and tracking, and (3) clinical scoring tools for critical care. We provide context and rationale for ethical considerations and recommendations that are actionable during the pandemic, and conclude with recommendations calling for long-term, broader change (beyond the pandemic) for public health organization and policy reform.
View details for DOI 10.1093/jamia/ocaa188
View details for PubMedID 32722749
Pros and cons of prosent as an alternative to traditional consent in medical research.
Journal of medical ethics
In their recent article, Porsdam Mann et al propose to share biomedical research data more widely, securely and efficiently using blockchain technologies.1 They present compelling arguments for how the blockchain presents both a technological innovation, and a deontologically grounded policy innovation to traditional research consent. Their proposal can be read in conversation with a rich body of evidence to suggest current consent processes are problematic on at least one of tripartite bases in biomedical research: that it be fully informed. This response attempts to further the author's discussion of social justice discourse in, and of their proposed prosent model to enhance engagement among under-represented and vulnerable populations in research, specifically. Motivating this response is the view that advancing technological capabilities is no doubt necessary, but on its own insufficient to reinvigorate distributive, procedural and social justice as guiding principles for con/prosent processes. I offer three pros and cons to consider in effort to deepen the model's commitments to social justice to historically marginalised groups in the biomedical research enterprise.
View details for DOI 10.1136/medethics-2020-106443
View details for PubMedID 32571849
A Policy and Practice Review of Consumer Protections and Their Application to Hospital-Sourced Data Aggregation and Analytics by Third-Party Companies.
Frontiers in big data
2020; 3: 603044
The Office of the National Coordinator for Health Information Technology estimates that 96% of all U.S. hospitals use a basic electronic health record, but only 62% are able to exchange health information with outside providers. Barriers to information exchange across EHR systems challenge data aggregation and analysis that hospitals need to evaluate healthcare quality and safety. A growing number of hospital systems are partnering with third-party companies to provide these services. In exchange, companies reserve the rights to sell the aggregated data and analyses produced therefrom, often without the knowledge of patients from whom the data were sourced. Such partnerships fall in a regulatory grey area and raise new ethical questions about whether health, consumer, or health and consumer privacy protections apply. The current opinion probes this question in the context of consumer privacy reform in California. It analyzes protections for health information recently expanded under the California Consumer Privacy Act ("CA Privacy Act") in 2020 and compares them to protections outlined in the Health Information Portability and Accountability Act ("Federal Privacy Rule"). Four perspectives are considered in this ethical analysis: 1) standards of data deidentification; 2) rights of patients and consumers in relation to their health information; 3) entities covered by the CA Privacy Act; 4) scope and complementarity of federal and state regulations. The opinion concludes that the CCPA is limited in its application when health information is processed by a third-party data aggregation company that is contractually designated as a business associate; when health information is deidentified; and when hospital data are sourced from publicly owned and operated hospitals. Lastly, the opinion offers practical recommendations for facilitating parity between state and federal health data privacy laws and for how a more equitable distribution of informational risks and benefits from the sale of aggregated hospital data could be fostered and presents ways both for-profit and nonprofit hospitals can sustain patient trust when negotiating partnerships with third-party data aggregation companies.
View details for DOI 10.3389/fdata.2020.603044
View details for PubMedID 33693425
View details for PubMedCentralID PMC7931961
Ethical, Legal, and Social Issues (ELSI) of Responsible Data Sharing Involving Children in Genomics: A Systematic Literature Review of Reasons.
AJOB empirical bioethics
Progress in precision medicine relies on the access to, use of, and exchange of genomic and associated clinical data, including from children. The ethical, legal, and social issues (ELSI) of such data access, use, and exchange may be accentuated in the pediatric context due in part to the highly sensitive nature of genomic data, children's consent-related vulnerabilities, and uncertain risks of reidentification. Systematic analyses of the ELSI and scientific reasons for why and how genomic data may be shared responsibly are, however, limited. Methods: We conducted a modified systematic review of reasons according to Sofaer and Strech to examine the ELSI and scientific reasons for "responsible" sharing of children's genomic and associated clinical data. Empirical articles, commentaries, and data-sharing policies indexed in Medline, Scopus, Web of Science, and BIOSIS were included in the analysis if they discussed ELSI and were published between 2003 and 2017 in English. Results: One hundred and fifty-one records met our inclusion criteria. We identified 11 unique reasons and 8 subreasons for why children's genomic data should or should not be shared. Enhancing the prospect of direct and indirect benefits and maximizing the utility of children's data were top reasons why data should be shared. Inadequate data privacy protection was the leading reason why it should not. We furthermore identified 8 reasons and 30 subreasons that support conditional data sharing, in which recontact for the continued use of children's data once they reach the age of majority was the most frequently endorsed condition. Conclusions: The complete list of ELSI reasons and responsible conditions provides an evidentiary basis upon which institutions can develop data-sharing policies. Institutions should encourage the sharing of children's data to advance genomic research, while heeding special reconsent and data protection mechanisms that may help mitigate uncertain longitudinal risks for children and families.
View details for DOI 10.1080/23294515.2020.1818875
View details for PubMedID 32975491