Recent Publications & Presentations

Our partners have delivered presentations in a range of international and local settings and published the results of their work in many high impact peer-reviewed journals.

Speaking Engagements

  • Longstaff, H, 2014, Ethical issues around the why and the how. Deliberative democracy as an example of bidirectional engagement, NSERC Hydronet Symposium, Burnaby, BC
  • Virani, A, 2014, Ethics, Stem Cells and the Information Age Panel, International Society for Stem Cell Research Annual Education Conference, Vancouver
  • Virani, A, Israel, D & d’Agincourt-Canning, L, 2014, Taking Clinical Pictures: Ethical implications in an era of smartphones, Canadian Bioethics Society Annual Meeting, Vancouver
  • Virani, A, Longstaff, H, Morin, K & Illes, J, 2014, Looking back, looking forward in bioethics research in new technologies: Using outcomes from bioethics research in the Human Genome Project to set priorities for the BRAIN projects, Canadian Bioethics Society Annual Meeting, Vancouver
  • Virani, A, 2014, Invited speaker/ Facilitator, Urban and Rural Access to healthcare, Break-out session, Cardiac Ethics Pre-conference, Canadian Bioethics Society Annual Meeting
  • Secko, D, Longstaff, H, and O’Doherty, K,2013, Science Communication Workshop Panel, 5th Annual Canadian Science Policy Conference, Toronto, Ontario
  • Khramova, V, Longstaff, H, Di Pietro, N, Illes, J, 2013, Sharing and Mining Data Acquired from Minors: A Call for Standards and Transparency (Poster), International Neuroethics Society Annual Meeting, San Diego, California
  • Hawkins Virani, A, 2013, Incidental Findings in Genetic Research, UBC Research Ethics Board Annual Retreat, Vancouver, BC
  • Hawkins Virani, A, 2013, Ethical Issues in Genetics: Exploring Old Controversies and New Dilemmas, UBC Medical Genetics Monthly Seminar Series, Vancouver, BC
  • Longstaff, H, Khramova, V, Roskams-Edris, D, Illes, J, 2013, Brain Drain or Brain Circulation: Professional Movement in Stem Cell Research (Plenary talk), Canadian Stem Cell Network Till & McCulloch Meeting, Banff, Alberta
  • Taylor, K, Hawkins Virani, A, Ho, A, 2013, “[We] have high IQs but low EQs”: Healthcare Providers Perceptions of Their Own Communication Barriers Regarding End-of-Life Issues, American Society of Bioethics and Humanities Annual Meeting, Atlanta, GA
  • Taylor, K, Hawkins Virani, A, Ho, A, 2013, Healthcare Providers’ Experiences Supporting Culturally Diverse Patients and Families Through Complex Healthcare Decisions, American Society of Bioethics and Humanities Annual Meeting, Atlanta, GA
  • Khramova, V, Longstaff, H,  Kwon, B.K, Illes, J, 2013, Travelling Abroad for Stem Cell Treatment for Spinal Cord Injury: Risk, Trust, and Decision-Making (Poster), Canadian Stem Cell Network Till & McCulloch Meeting, Banff, Alberta
  • Longstaff, H, 2013, Ethics and Stem Cell Research., Integrated Science Course, UBC, Vancouver, BC
  • Longstaff, H, 2013, Using an ethical lens to consider mental health and addiction case studies, The Social Aetiology of Mental Illness [SAMI] training program webinar series, Toronto, Ontario
  • Longstaff, H, September and October 2012, Facilitator for Advanced Biofuels Public Deliberation, Concordia University, Montréal, Québec
  • Clarke, S, Hawkins, A, Godwin, K, Lehman, A and Virani, S, 2012, Using family history to identify individuals at high risk for idiopathic dilated cardiomyopathy, Canadian Association of Genetic Counselors Annual Education Meeting, Saskatoon, SK
  • Hawkins, A, 2012, When Enough is Enough: The Ethics of Restraint in a Clinical Care Setting, Ethics for Lunch lecture series, Providence Health Care, Vancouver, BC
  • Longstaff, H, 2011, Ethics and Stem Cell Research. Integrated Science Course, UBC, Vancouver, BC
  • Hawkins, A, 2011, The Use of Deliberative Democracy to Address the Ethical and Social Challenges of Biobanks, Menzies Research Institute, Hobart, Tasmania, Australia
  • Hawkins A, 2011, Genomics, Ethics and Industry Practice: Panel respondent, Student Biotechnology Network Conference, Vancouver, BC
  • Hawkins A, 2011, Ethical Issues in Research Involving Human Subjects, BRIDGE Course, UBC, Vancouver, BC
  • Hawkins, A, 2011, An Ethical Framework for Substitute Decision-Making, Ethics for Lunch lecture series, Providence Health Care, Vancouver BC
  • Hawkins, A, 2011, Genomics, Ethics and Industry Practice, Panel respondent, Student Biotechnology Network Conference, Vancouver, BC
  • Hawkins, A, 2011, Ethical Issues in Research Involving Human Subjects, BRIDGE Course, UBC, Vancouver, BC
  • Hawkins, A, 2010, Access to Genetic Services: Ethical Challenges in the Translation of Knowledge to the Clinic, Research in Progress Seminar Series, James Hogg iCapture Centre, Vancouver, BC
  • Longstaff H, McDonald, Michael, and Bailey, Jen. (2010). Communicating risks and benefits about contentious health topics: The case of human induced pluripotent stem (iPS) cells. Society For Risk Analysis Annual Meeting, Salt Lake City Utah, US.
  • Hawkins A, 2009, Clinical Perspectives on Biobank Governance, Making Connections’ Meeting Banff, AB
  • Hawkins A, 2009, A Deliberative Public Engagement on Sequencing the Salmon Genome: Creating a ‘culture’ for communication, Intercultural Interdisciplinarity Symposium, Vancouver, BC
  • Hawkins A, 2006, Prenatal and Neonatal Genetics – Counseling and Medical Issues, Sarah Lawrence College, Bronxville, NY

Select Publications

  • Jacob, K. J., Longstaff, H., Scott, C. T., & Illes, J. (2015). Focus on people and the science will follow: Motivating forces for professional movement in stem cell research. Stem Cell Reviews and Reports11(4), 533-539.
  • Van der Loos, K. I., Longstaff, H.Virani, A., & Illes, J. (2015). Consent in escrow: Opting to opt in. Journal of Law and the Biosciences2(3), 768-770.
  • Longstaff, H., Khramova, V., Portales-Casamar, E., & Illes, J. (2015). Sharing with more caring: Coordinating and improving the ethical governance of data and biomaterials obtained from children. PloS ONE,10(7), e0130527.
  • McDaniels, T.L., Chang, S.E., Hawkins, D., Chew, G., & Longstaff, H. (2015). Towards disaster-resilient cities: An approach for setting priorities in infrastructure mitigation efforts. Environment Systems and Decisions35(2), 252-263.
  • Capurro, G., Longstaff, H., Hanney, P., & Secko, D.M. (2015). Responsible innovation: An approach for extracting public values concerning advanced biofuels. Journal of Responsible Innovation2(3), 246-265. 
  • Virani, A. & Longstaff, H. (2015). Ethical considerations in biobanks: How a public health ethics perspective sheds new light on old controversies, Journal of Genetic Counseling24(3), 428-432. 
  • Virani, A. & Austin, J. (2014). The importance of genetic counseling in clinical genome and exome sequencing [Letter to the editor]. New England Journal of Medicine.
  • Browman, G., Vollmann, J., Virani, A. & Schildman, J. (2014). Improving the quality of ‘personalized medicine’ research and practice – through an ethical lens’, Personalized Medicine, 11(4), 413-423.
  • Paylor, B., Longstaff, H., Rossi, F., Illes, J. (2014). Collision or convergence? Beliefs and politics in neuroscience discovery, ethics, and intervention, Trends in Neurosciences, 37(8), 409–412.
  • Longstaff, H., Secko, D. (2014). Assessing the quality of a deliberative democracy mini-public event about advanced biofuel production and development in Canada, Public Understanding of Science, 0963662514545014.
  • Burgess, M. & Longstaff, H. (2013). Representing the cultural significance of salmon in a west coast public deliberation. In K. Culver, and O’Doherty, K. (Eds.), Fishing and Farming Iconic Species: Cod and Salmon and Social Issues in Genomic Science. Ontario: Captus University Publications.
  • O’Doherty, K., Longstaff, H., & Burgess, M. (2013). Using deliberative democracy to inform policy on application arising from salmon genomics research. In K. Culver, and O’Doherty, K. (Eds.), Fishing and Farming Iconic Species: Cod and Salmon and Social Issues in Genomic Science. Ontario: Captus University Publications.
  • Longstaff, H. & Hawkins Virani, A. (2013, May). Mind the ethics gaps. Vue Magazine, Feature article.
  • Longstaff, H., Khramova,V., Eijkholt, M., Mizgalewicz, A. & Illes, J.(2013). Hopes and fears for professional movement in the stem cell community, Cell Stem Cell, 12(5), 517–519.
  • McDonald, M. & Longstaff, H. (2013). Spinning a stem cell ethics web, Journal of Accountability in Research: Policies and Quality Assurance, 20(2),107-126
  • Hawkins, A., Creighton, S., & Hayden, M.R. (2012). Developing a comprehensive, effective patient friendly website to enhance decision-making in predictive testing for Huntington disease. Genetics in Medicine15(6), 466–472.
  • Hawkins, A., Creighton, S., Ho, A., McManus, B., & Hayden, M. R. (2013). Providing predictive testing for Huntington disease via telehealth: Results of a pilot study in British Columbia, Canada. Clinical Genetics84(1), 60-64.
  • Longstaff, H., McDonald, M., Bailey, J. (2013). Communicating risks and benefits about ethically controversial topics: The case of induced pluripotent stem (iPS) cells. Stem Cell Reviews and Reports9(4),388-396.
  • Hawkins, A. (2012). New insights into familial diarrhea syndrome, Clinical Genetics82(3), 221-222. 
  • Hawkins, A. (2012). Rethinking the genetic basis and inheritance of fascioscapulohumeral muscular dystrophy,Clinical Genetics. 82(3), 219-220.
  • Hawkins, A. (2012). A phase 1 enzyme replacement study offers promise for severe hypophosphatasia. Clinical Genetics82(3), 220-221.
  • O’Doherty, K., Hawkins, A., & Burgess, M. (2012). Involving citizens in the ethics of biobank research: Informing institutional policy through structured public deliberation. Social Science & Medicine, 75(9), 1604-1611.
  • Hawkins, A., Creighton, S., & Hayden, M., (2013). When access is an issue: Exploring barriers to predictive testing for Huntington disease in BC, Canada. European Journal of Human Genetics21(2), 148-153.
  • Hawkins, A., & Ho, A. (2012). Genetic counseling and the ethical issues around direct to consumer genetic testing. Journal of Genetic Counseling. 21(3), 367-373.
  • O’Doherty, K., Ibrahim, T., Hawkins, A., Burgess, M., & Watson, P. (2012). Managing the introduction of biobanks to potential participants: Lessons from a deliberative public forum.  Biopreservation and Biobanking10(1), 12-21.
  • Hawkins, A. & O’Doherty, K., (2011). “Who owns your poop?”: Implications of human microbiome research on the ELSI aspects of biobanking. BMC Medical Genomics4(72), 1-9.
  • Hawkins, A., Ho, A., & Hayden, M. (2011). Lessons from predictive testing for Huntington disease: 25 years on. Journal of Medical Genetics,48(10), 649-650.
  • Hawkins, A., & Hayden, M. (2011). A grand challenge: Providing benefits of clinical genetics to those in need. Genetics in Medicine13(3), 197-200.
  • O’Doherty, K., Burgess, M., Edwards, K., Gallagher, R., Hawkins, A., Kaye, J., McCaffrey, V., & Winickoff, D. (2011) From consent to institutions: Designing adaptive governance for genomic biobanks. Social Science and Medicine, 73(3), 367-374.
  • Hawkins, A. (2011). Skipping along: An exon skipping therapy shows promise for Duchenne muscular dystrophy. Clinical Genetics, 80(5), 424-425.
  • Hawkins, A. (2011).The accuracy of risks for cancer in Lynch syndrome. Clinical Genetics80(5), 425-426.
  • Hawkins, A. (2011). Looping the link between Gaucher and Parkinson’s disease. Clinical Genetics80(5), 426-427.
  • Longstaff, H., & Secko, D. (2010). Media influence on biobank deliberations. Journal of Health & Mass Communication2, 73-96.
  • O’Doherty, K. & Hawkins, A. (2010). Structuring public engagement for effective input in policy development on human tissue biobanking. Public Health Genomics, 13(4), 197-206.
  • Hawkins, A., O’Doherty, K. & Burgess, M. (2010). Biobank governance: A lesson in trust. New Genetics and Society29(3), 311-327.
  • Longstaff, H., & Burgess, M. (2010). Recruiting for representation in public deliberation on the ethics of biobanks. Public Understanding of Science, 19(2), 1-13.
  • Hawkins, A. (2010).  Biobanks: Relevance and implications for genetic counselors, Journal of Genetic Counseling,19 (5), 423-429.
  • Longstaff, H., Schuppli, C. A., Preto, N., Lafrenière, D. & McDonald, M. (2009). Scientists’ perspectives on the ethical issues of stem cell research. Stem Cell Reviews and Reports5(2), 89-95.
  • Caulfield, T., Zarzeczny, A., McCormick, J., Bubela, T., Critchley, C., Einsiedel, E., Galipeau, J., Harmon, S., Huynh, M., Hyun, I., Illes, J., Isasi, R., Joly, Y., Laurie, G., Lomax, G., Longstaff, H., McDonald, M., Murdoch, C., Ogbogu, U., Owen-Smith, J., Pattinson, S., Premji, S., von Tigerstrom, B., & Winickoff, D.E. (2009). The stem cell research environment: A patchwork of patchworks. Stem Cell Reviews and Reports, 5(2), 82-88.
  • McDaniels, T., Chang, S., Cole, D., Mikawoz, J., & Longstaff, H. (2008). Fostering resilience to extreme events within infrastructure systems: Characterizing decision contexts for mitigation and adaptation. Global Environmental Change18(2), 310-318.
  • Marden, E., Longstaff, H., & Levy, E. (2006). The policy context and public consultation: A consideration of transgenic salmon. Journal of Integrated Assessment, 6(2), 73-97.
  • McDaniels, T., Longstaff, H., & Dowlatabadi, H. (2006). A value-based framework for risk management decisions involving multiple scales: A salmon aquaculture example. Journal of Environmental Science & Policy9, 423-438.