Ethics Advisory Committee
Ethics answers the questions of morality. It refers to the well-known standards of what is right and wrong, just or unjust, in terms of rights and fairness.
The mission of the Ethics Advisory Committee of the National Hemophilia Foundation is to:
- foster integrity in our bleeding disorders community by encouraging ethical behavior and promoting awareness of ethical issues;
- act to assist in conflict resolution in a manner independent of member conflict of interest;
- encourage collaborative problem solving among members of the bleeding disorders community;
- encourage teaching and research on relevant ethical issues.
The National Hemophilia Foundation’s (NHF) Social Work Working Group first suggested the idea of the committee. With the support of the Medical and Scientific Advisory Council (MASAC), NHF’s Board of Directors voted to make the Ethics Advisory Committee a full committee of the Board.
Why is it important that the Ethics Advisory Committee exist? Many not-for-profit companies now have ethics as part of their organization because there are real and possible conflicts of interest or biases that may occur. In the bleeding disorder community there are relationships among industry, patient, caregivers and organization representatives. These relationships can give rise to conflicts of interest.
The goal of the Ethics advisory Committee is to be a presence to hear and acknowledge concerns among NHF membership. The committee does not wish to become involved in the details of each issue, but instead, to identify trends and patterns. The committee may give gentle guidance concerning what would be appropriate approaches to questionable situations and what could be done, but in a general and nondirective manner.
If you submit a question, your name will not be included and any identifying information will not be included. Submissions are kept general in order to maintain confidentiality and for teaching purposes.
Current members of the Ethics Advisory Committee are:
||Michael D. Tarantino, MD, Bleeding and Clotting Disorders Institute, Peoria, Illinois Kristie Ostash, MD, Sammamish, WA
||Chris Feudtner, MD, PhD, MPH, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania
||Jocelyn Bessette Gorlin, RN, CPNP, Children’s Hospitals and Clinics of Minnesota, Minneapolis, Minnesota
|Social Work Representative:
||Nancy Hatcher, MSW, LCSW, Children's Hospital Central California, Madera, California
||Michael Cole, PhD, Reedley College, Reedley, California
Before submitting your issue to the committee, you may consider visiting one or more of the following Web sites for guidance in formulating your ethics question: