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Ethical Guidance/Best Practice

NHF ETHICAL Best Practices Recommendations

Intended Purpose: To provide best practice recommendations to assist our bleeding disorders community to determine what is the best behavior or what is best for your (our) community.

Intended Audience: The entire bleeding disorders community—Including but not limited to the following: people with bleeding disorders, NHF chapters, NHF staff, NHF Board of Directors, NHF volunteers, hemophilia treatment centers (HTC), associated health care professionals and associated industry partners (pharmaceutical companies, home health care companies, insurance carriers).

Primary Authors: NHF Ethics Working Group & NHF staff

NHF is an organization for all people with bleeding disorders and their families whose mission is guided by the core values of: altruism, commitment, compassion, diversity, integrity, passion and transparency. Read NHF's Core Values Statement.

The NHF’s Ethics Working Group (EWG) was created to foster integrity in our bleeding disorders community by encouraging ethical behavior and promoting awareness of ethical issues. We believe in collaborative problem solving among members of the bleeding disorders community, and we encourage teaching and research on relevant ethical issues.

Why Have Best Practices: In ethics, we are primarily concerned with: What is good? What is right? Or, what is the “best practice in this situation? This is followed by a secondary question of action: What should I do? These questions together become a theory concerning the moral correctness of conduct. Ethical principles have been used as rules, or guidelines, to help determine what is right, wrong or best for ourselves and/or our community, which in turn influences our behavior.  It is not the intention of the EWG to become involved in the details of each issue, but instead to identify trends and patterns where a breach in ethical behavior may exist, and provide guidance or “best practice” recommendations to help resolve questionable ethical situations. Although the EWG is not a regulatory group, these recommendations are from a multidisciplinary group of individuals including: those with and without a bleeding disorder, social workers, nurses, physicians, people outside the bleeding disorder community, NHF staff and members of NHF’s Board of Directors.

The National Council of Nonprofits supports this approach and has stated:

It's useful to adopt a set of principles to guide a nonprofit organization’s decision making and activities, as well as the behavior of its employees, volunteers, and board members. These principles might be called the nonprofit's "statement of values" or "code of conduct," or something else. Honesty, integrity, transparency, confidentiality, and equity are each examples of values that are typically expressed in a charitable nonprofit's code of ethics. The purpose of adopting such a statement formally is to provide employees, volunteers, and board members with guidelines for making ethical choices and to ensure that there is accountability for those choices. When board members of a charitable nonprofit adopt a code of ethics, they are expressing their commitment to ethical behavior. Such a commitment goes a long way to earning the public’s trust.



Ethical Best Practices

Honesty & Integrity:
Honesty and integrity should not be compromised; both are of the utmost importance to ensure that trust is maintained within and outside the bleeding disorders community.

Any form of discrimination (e.g., gender, racial, sexual orientation, religious, disability) should not be allowed or tolerated. All persons within the bleeding disorders community, as well as their family members should be included; however, if someone breaches or compromises the relationship (e.g. unlawful or unethical behavior) it is recommended to have a written policy on how to address the matter or terminate the relationship.

Mission Statement & Core Values:
Your group/committee/chapter should have a written statement regarding your group’s mission and set of values.

Transparency is key to maintaining a trusting relationship within the community, and NHF is committed to establishing an environment of trust and transparency for all members of our bleeding disorders community. We highly recommend that financial statements and business policies be made available and accessible to the community.

Conflict of Interest:
“Entering a situation where reasonable onlookers would judge that the temptation might become too strong to avoid for one to elevate one’s own or another’s interests above the professed duty to the patient or public.” (Brody, H. The ethics of drug development and promotion: the need for a wider view. Medical Care 2012;50(11):910-12.) It is recommended that your members disclose and sign a conflict of interest document at least annually or when new conflicts arise.