246015 Autism, risk communication and ethics

Monday, October 31, 2011: 12:30 PM

John Rossi, VMD, MBe , Department of Community Health and Prevention, Drexel University School of Public Health, Philadelphia, PA
Michael Yudell, PhD, MPH , School of Public Health, Drexel University, Philadelphia, PA
Autism spectrum disorders are undeniably a public health issue of some importance. Their incidence has increased markedly in recent years, for reasons that are not entirely clear to the scientific community; these disorders can have a devastating effect on both affected individuals and their families; and little in the way of etiologic understanding or treatment exists. A large amount of etiologic research is currently underway, and a spate of new research findings is expected to be available in the next few years. The difficulty of interpreting some of these new data—particularly genetic risk factor data—and the vacuum of etiologic knowledge into which they will fall combine to present scientific and ethical challenges in autism risk communication. This presentation will focus on a number of ethical issues in autism risk communication, which include (1) the avoidance of blame and stigma, both of which loom particularly large in the history of autism; (2) the maximization of benefits and minimization of harms to risk message recipients; (3) discrepancies between populations in the efficacy of risk communication, and the justice considerations this invokes; (4) ethical issues pertaining to the interpretation of risk data, both as relates to population versus individual risk, and also as relates to the interpretation of findings from relatively new research methodologies; (5) the appropriate level of evidentiary support for risk claims before they are disseminated; (6) the value-ladenness of risk, and its implications for how risk communication should be conducted, particularly as relates to public involvement in science.

Learning Areas:
Communication and informatics
Diversity and culture
Ethics, professional and legal requirements
Public health or related organizational policy, standards, or other guidelines
Social and behavioral sciences

Learning Objectives:
(1) Identify numerous ethical issues in autism risk communication. (2) Analyze these ethical issues with respect to the negotiation of competing ethical concerns, for example beneficence and nonmaleficence. (3) Discuss risk communication in autism in the larger context of the history of autism and the sociology and philosophy of science.

Keywords: Bioethics, Risk Communication

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am qualified to present because (1) I am formally trained in philosophy, bioethics, and medicine; (2) and am actively collaborating with numerous faculty at the Drexel SPH on research relating to autism, risk communication and ethics. These collaborators include bioethicists and epidemiologists currently engaged in etiologic research regarding autism spectrum disorders. This collaborative research was ongoing before I joined the Drexel SPH, with a 2009 conference on autism, risk communication and ethics already having been held. I am involved in the preparation of a manuscript summarizing and discussing these conference proceedings. My collaborator and mentor, Dr. Michael Yudell, has previously published on autism and ethics, particularly as relates to the history of autism (he is a historian by training). We are in the process of preparing numerous manuscripts on autism, risk communication and ethics, and Dr. Yudell is currently working on a book about the history of autism. Another close collaborator, Dr. Craig Newschaffer, directs the EARLI study, a large longitudinal cohort study examining risk factors for ASDs. He is a source of expertise regarding the epidemiologic aspects of our work. Thus my individual expertise is enhanced by these productive collaborations.
Any relevant financial relationships? Yes

Name of Organization Clinical/Research Area Type of relationship
Pfizer autism spectrum disorders Sponsors my postdoctoral fellowship

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.