Biobanks
A biobank is a collection of human tissue and/or blood samples.
The genetic information derived from these samples can typically be
linked to other forms of identifying personal information for:
- research purposes – to better understand the determinants of
health and more effectively treat disease;
- criminal investigations – to convict the real perpetrators of
heinous crimes and free the wrongfully convicted; and/or
- compassionate reasons – to identify the human remains of
missing persons and inform family members.
While these constitute important societal goals, biobanks also raise significant
concerns about the privacy and confidentiality rights of individuals whose tissues
samples and personal data are being collected in the biobank. GE3LS
researchers aim to understand the extent to which the public is willing to make
trade offs between privacy protection and data access, for which purposes and
under what conditions.
GE3LS research tries to develop effective frameworks for governing
the creation and use of biobanks in a way that balances the pursuit of laudable
social goals, with the need to protect – and respect – privacy
as a fundamental value in a free and democratic society.
Stem Cell Research
New and emerging stem cell research offers exciting potential for curing some
of the most serious and debilitating human diseases, disorders and injuries,
such as Parkinson's, diabetes and spinal cord injuries.
At the same time, these innovative technologies, to the extent that they
use embryonic stem cells, raise fundamental ethical questions. Some of these
include concerns about the moral status of the human embryo, free and informed
consent of the donors whose eggs and sperm created the embryo, the safety of
experimental treatments and the respect for human dignity and integrity.
GE3LS research seeks to articulate these and other fundamental issues
underlying public debate on stem cells. GE3LS research strives to
balance competing social values as well as help guide scientific progress within
appropriate and acceptable limits. It also tries to better understand public
perceptions and viewpoints so that they may be considered in ongoing research
and help inform policy development.
Genetic Testing
Clinical genetic tests can now provide a whole new dimension of information
about one's health potential over the course of a lifetime. In some cases,
test results allow for earlier preventive measures and treatments; in others,
they can help prepare for more informed reproductive choices. GE3LS
researchers study effective ways of providing this information to individuals
and their families and help support decision-making processes in the clinical
context. GE3LS researchers also anticipate and evaluate other potential
impacts such test results can have on individuals and their families, including:
- the potential psychological impact of receiving predictive information about one's
chances of developing a serious disease for which there is no known prevention or treatment;
- potential discriminatory effects such test results may have in employment and
insurance contexts;
- potential disruptions in family relationships when such tests reveal new
knowledge about paternity linkages.
There are many complex GE3LS questions that arise in the course of
genetic research studies as well, including: what to do when positive test results
are obtained in the context of a research project; the utility and validity of
these test results that were not intended to have clinical application; and
whether the researcher is even able to trace back research samples to specific
individuals? If so, should researchers report back the test results to affected
individuals and their families? Under what circumstances and subject to what conditions
should this be done?
Recent years have seen an unprecedented growth in the availability of direct-to-consumer
genetic tests for recreational purposes. Individuals clearly have the right to be curious
and to seek out knowledge about themselves and their ancestry. Businesses have seized
the opportunity to provide commercial access to genetic testing services over the internet.
Yet, this activity is not entirely without related risks. GE3LS research
examines appropriate legislative and policy frameworks for regulating the scientific,
safety, consumer, privacy and security aspects of this new burgeoning industry.
Genetically Modified Organisms
Genetic modification of food and other organisms (GMOs) is a hot topic both at
home and abroad. Genetically modified crops, animals and fish may provide more
robust and sustainable sources of food, with greater disease resistance and higher
growth potential. Though a promising prospect to help enhance production efficiencies,
GMOs are not without controversy. GE3LS researchers aim to understand and
consider the controversies and implications of GMOs from multiple perspectives including:
- public perceptions of risks and benefits and consumers' level of receptiveness
and acceptance of GMOs;
- labelling and production requirements to meet transparency and safety concerns;
- cultural and socio-economic impacts on farmers, fishermen and Indigenous communities;
- intellectual property regimes designed to create commercial incentives for
developers, while also allowing for an equitable distribution of benefits, particularly
for developing countries;
- broader environmental issues of altering and/or introducing new life forms,
including potential impact on other dependent species and concerns of biodiversity; and
- larger ethical questions underlying critical resource allocation choices
between food and fuel imperatives.