2. Pediatric Cancer, Quality of life and the Sociotechnical Ethics of Genetic Diagnoses Vaso Rahimzadeh, MSc May 6 th, 2014 CSSH Conference Vaso Rahimzadeh, MSc May 6 th, 2014 CSSH Conference

3. Pediatric High Grade Astrocytomas The Condition Primary brain tumors are the leading cause of cancer-related death in children under the age of 20, now surpassing leukemia High-grade astrocytomas (HGA) is a particularly lethal and disabling form of brain cancer; barely 10% of children and young adults survive 3 years post diagnosis Annual, direct costs of care for new cases of HGA across Canada are approx. $150 million Children with the K27 mutation have dismal prognoses

4. The Technology Introductio n of palliative care at time of diagnosis based on resistance to all known therapies HGA diagnosis Responsive to some treatment options Possible enrollment in ongoing clinical trials Responsive to some treatment options Possible enrollment in ongoing clinical trials M3M3 M3M3 K27 Therapy stratificat ion Genetic testing of tumor sample Therapy stratificat ion M2M2 M2M2 M1M1 M1M1

5. What is pediatric palliative care? Palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family Palliative care, while appropriate for anyone with a life- threatening diagnosis, focuses on quality of life, regardless of the expected prognosis Need for integration of palliative care early after diagnosis to assure an ongoing focus on quality of life, shared decision- making and collaboration with the child

6. The goal of pediatric palliative care should be to add life to the child’s years, not simply add years to the child’s life American Association of Pediatrics (2000) The Imaginary?

7. How do themes that emerge in the new sociology of the child(hood) shape the ethics of engagement in pediatric palliative care research on quality of life?

8. Towards a New Sociology of Childhood  Childhood as a social construction, affected and shaped by wider social and cultural elements, within concrete, historical circumstances.  ‘Children’ occupy and conduct themselves in worlds that are full of meaning for them, but about which adults are, at least partially, ignorant. It has led to an emphasis on listening to children’s voices.  Politically ‘children’ are powerless and disadvantaged. The new sociology is a theory of advocacy, sociology for children rather than sociology of children.  Children are an identifiable social group, which can have a common set of needs and rights.

9. Respect for Persons Beneficence Non- maleficence Non- maleficence Justice New sociology of the child(hood) Principles of Bioethics

10. Fulfilling Ethical Principles using a qualitative approach Participat ory Rights  Enhancement of stakeholder (pediatric patients) involvement in improving the structure and impact of the palliative care community  Centralizes expertise and sources of ‘data’ from within pediatric patient groups  Situates the child as a critical actor in developing best practices; better understand social epistemologies of terminal illness in children  Centralizes expertise and sources of ‘data’ from within pediatric patient groups  Situates the child as a critical actor in developing best practices; better understand social epistemologies of terminal illness in children Communi ty developm ent Contributi on to knowledg e generatio n  Engages children directly in recognition of their moral and social agency as individuals and as palliative care patients  Better captures the nuances of children’s views through methodological innovation i.e. in-depth interviewing, or art-based analyses  Engages children directly in recognition of their moral and social agency as individuals and as palliative care patients  Better captures the nuances of children’s views through methodological innovation i.e. in-depth interviewing, or art-based analyses

11. Question & Answer

12. Special Thanks David McCutcheon Pediatric Palliative Care Fellowship McGill Pediatric Palliative Care Research Group Genome Canada iCHANGE Consortium

13. References 1.Schmidt, K. Pediatric Palliative Care: Starting a Hospital-Based Program. Pediatr Nurs. 2011;37(5):268-274. 2.World Health Organization. Cancer Pain Relief and Palliative Care. Geneva, 1990. 3.James, A. and Prout, A. Constructing and reconstructing childhood. Contemporary issues in the sociological study of childhood. London 1990. 4.Lavalette, M. and Cunningham, S. (2002). The sociology of childhood. In B. Goldson, M. Lavalette and J. McKechnie (Eds.) Children, Welfare and the State (pp. 9–28). London: Sage Publications.