Rose M. Geransar
BSc (Biochemistry), PhD Candidate (Office of Medical Bioethics & Department of Community Health Sciences, Faculty of Medicine), University of Calgary
Rose Geransar didn't realize how much she took for granted about molecular biology until she was asked to explain the mechanisms of 'bioengineered' seeds to a group of non-scientists.
"When I looked out at the group, I saw a lot of confused faces. I quickly realized that I had to explain things differently," she recalls with a laugh. She came up with the idea of developing a series of animated PowerPoint slides, which helped get the difficult concepts across.
And that was just the humble beginning of a process which led Rose to become interested in, and work to address, the challenges of communicating and translating scientific knowledge to various user groups.
While still an undergrad student at the University of Calgary, Geransar signed on as a research assistant to Edna Einsiedel, communications studies professor at the university and a long-time Genome Canada GE3LS researcher. Since 2003, Geransar has contributed her science savvy to a range of Genome Canada-funded GE3LS projects, from stem cell research policy development and public opinion, to genetically modified food controversies and direct-to-consumer advertising for genetic testing.
And in return, the benefits of engaging in a multi-disciplinary environment rubbed off on her as well. Working alongside Einsiedel sparked in Rose an enduring interest in bioethics and qualitative inquiry, which now forms the basis of Geransar's current PhD research into consent.
"I regard Rose more like a colleague and collaborator," says Einsiedel. "She has developed excellent research skills, and more importantly, is able to appreciate GE3LS issues from a variety of perspectives, as well as their broader contexts."
The 2008 recipient of CIHR's Douglas Kinsella Doctoral Award for Research in Bioethics, Geransar is now exploring the meaning of consent from the perspective of parents considering donating their baby's umbilical cord blood to a public bank in Canada. Of the 14 umbilical cord blood banks in Canada, three are public.
"Consent forms are legalistic documents that are very hard for people to understand," notes Geransar, whose graduate research is funded by CIHR and supervised by Glenys Godlovitch, chair of the University of Calgary's Conjoint Faculties Research Ethics Board. "They're typically written from the perspective of the organization. Even only a short time after signing a consent form, very few people can recall the primary purpose behind the form, let alone the details."
Along with analyzing the policies of other countries with national cord blood programs, Geransar is developing more "donor-centric" mechanisms of governance for consent processes that meet the needs of donor parents. With plans underway to create a national public cord blood bank program in Canada, the research is timely.
Post PhD, but before seeking a post-doctoral fellowship in bioethics ("somewhere outside Canada would be nice"), she plans to work with professional organizations to develop information materials for prospective donors and their clinicians, to help them better understand the consent process. While she will seek some funding to cover the cost of materials, the work will be done on a mostly pro-bono basis.
"I don't want my research to be quietly published and then just fade away. I want to use it to give back to the community."
Select Publications and Presentations:
Geransar R. "Elucidation of issues of informed consent in public umbilical cord blood banking: Canadian Parents' Perspectives." (Thesis in progress.)
Geransar R., Einsiedel E. "Evaluating online direct-to-consumer marketing of genetic tests: informed choices or buyers beware?" Genet Test. 2008 Mar; 12(1):13-23.
Downey R., Geransar R. "Stem cell research, 'publics', and stakeholder views." Health Law Review. 2007. (Background Paper commissioned for Health Law Institute/Stem Cell Network Stem Cell Research Ethics Workshop, Montreal, February 21 and 22, 2007.)
Geransar, R., Chouinard, I., Zadunayski, A. & Godlovitch, G. "Issues of informed consent in public umbilical cord blood banking: Canadian parents' perspectives." (Submitted to Canadian Bioethics Society Meeting, Toronto, ON, 2007.)
Geransar, R. "Banking on trust? Issues of informed consent in pharmacogenomic research." In Emerging Technologies. E. Einsiedel & M. Burgess, eds., University of British Columbia Press, 2006.
Downey, R., Geransar, R., & Einsiedel, E. "Angles of vision: Stakeholders & human embryonic stem cell policy development", in Crossing Over: Genomics in the Public Arena. Edna Einsiedel & Frank Timmermans, eds. University of Calgary Press, 2005.
Read more … about umbilical cord banking (UCB) in Canada
Private banks store umbilical cord blood (CB) for the exclusive use of the child and the child's family, charging the parents an upfront collection fee and subsequent storage fees until the child reaches the age of majority. At that point, the child has the option to continue storage or discard the sample. Parents who opt to store their child's CB in these banks typically regard the service as a form of additional 'insurance' for their family. The parents enter into a contract with the cord blood bank that outlines the conditions of the maintenance of their cord blood sample. According to the medical literature, private CB storage is only medically indicated for a select number of families who have a history of specific kinds of blood disorders. Even if a family has stored CB and their child requires a CB transplant, the stored cord blood may not be suitable for the treatment of the disease. An allogenic transplant (CB from another health child, stored in a public cord blood bank) might be required instead.
Public banks accept cord blood as donations, and the donor families have no subsequent claim to the donated sample (just as if they had donated regular blood). The donations, if of sufficient quality, are tissue-typed and entered into internationally searchable stem
registries, and, after a few years, may become available for use by anyone. Non-viable samples are sometimes used for research by the public cord blood bank or affiliated academic institutions. Because of the public nature of these cord blood banks, the donations are subject to specific Health Canada regulations and must go through a rigorous screening process to ensure their safety.
Canada is currently moving towards developing a national cord blood program in order to better meet the future needs of its own population and to be in a position to give back to the international community in proportion to what it has been receiving, in terms of cord blood units.
-Rose Geransar