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Presented by Gillian Longley RN, BSN, MSS University of Nevada Las Vegas, November 2011.

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1 Presented by Gillian Longley RN, BSN, MSS University of Nevada Las Vegas, November 2011

2 ETHICS: The basic concepts and principles of right human conduct.

3 KEY QUESTIONS 1. Is it ethically acceptable to surgically alter the natural genitals of a child, when no compelling therapeutic reason exists? 2. Who is the appropriate person to give permission for elective, nontherapeutic cutting of anyone’s genitals?

4 OUTLINE Principles of medical ethics and human rights Ethics of common arguments for circumcision Medical benefits rationales Parents’ vs. child’s rights Informed consent Conscientious objection of health professionals Pathways to a more ethical future

5 Four Principles of Medical Ethics in relation to neonatal circumcision Autonomy: Does it respect the individual’s right to make his own decisions? Beneficence: Is it reasonably expected to do good? Non-maleficence: Does it avoid doing unnecessary harm? Justice: Is it fair?

6 Human Rights: Key Documents Universal Declaration of Human Rights (1948) International Covenant on Civil & Political Rights (1966) The Convention on the Rights of the Child (1989) The Universal Declaration on Bioethics and Human Rights (2005) UNIVERSAL = NO EXCEPTIONS!

7 Human Rights: Key Principles and circumcision GENERAL RIGHTS: Right to life, liberty, and security of person Right to property Right to freedom from torture, and cruel, inhuman, and degrading treatment Right to equal protection before the law. SPECIAL RIGHTS FOR CHILDREN: Right to opportunities for children to develop physically, mentally, morally, spiritually, and socially in a healthy and normal manner, and in conditions of freedom and dignity. Right to protection from all forms of mental and physical violence, injury, or abuse, including sexual abuse. Right of protection from traditional practices prejudicial to the health of children.

8 Other medical ethics sources AMA Code of Ethics Circumcision position statements of medical organizations (e.g. AAP, CPS, RACP, BMA, KNMG) AAP Ethics Committee (1995): Informed consent, parental permission, and assent in pediatric practice.

9 “ When you do it to a baby, there ' s no way back. I ’ ll never know what sex would be like with a foreskin. It makes me angry that somebody else decided for me, to do something that I probably would not have done if I was deciding for myself.” MEN’S VOICES

10 “I have never been able to accept the fact that someone cut part of my penis off when I was a baby. The sheer monstrousness of it haunts every waking moment of my life. ” MEN’S VOICES

11 Neonatal Circumcision: Core statement of the ethical problem Circumcision is a non-therapeutic medically unnecessary irreversible amputation of a normal, healthy, functional body part from a non-consenting person.

12 “MEDICAL BENEFITS”: A CAVEAT Pathologizing the foreskin

13 MEDICAL JUSTIFICATIONS A medical-benefits or 'therapeutic' justification requires that: 1. benefits sought outweigh the risks and harms 2. only reasonable way to obtain these benefits, and 3. necessary to the well-being of the child. None of these conditions is fulfilled for routine infant male circumcision. If we view a child's foreskin as having a valid function, we are no more justified in amputating it than any other part of the child's body unless the operation is medically required treatment and the least harmful way to provide that treatment. From: The Ethical Canary: Science, Society, and the Human Spirit, by Margaret Somerville. Toronto, 2000.

14 Question #1: Q: Is it ethically acceptable to surgically alter the natural genitals of a child, when no compelling therapeutic reason exists? A: NO Nontherapeutic newborn circumcision of males violates all four of the core principals of medical ethics, and a host of human rights principals. Circumcision of a child is acceptable only when medically necessary, and only when conservative treatment approaches have failed.

15 PARENTS’ “RIGHTS” vs. CHILD’S RIGHTS Parents given wide latitude on childrearing decisions Children not considered competent to make medical decisions for themselves Parents as proxy/surrogate decision-makers

16 “Best Interests”: Deciding for Children Factors in determining “best interests” Maximizing benefits while minimizing harms Consider both physical and emotional needs Least restrictive and least intrusive way to obtain desired benefits Family’s views and socio-cultural background Patient’s own ascertainable wishes, feeling, and values BMA: “… prioritising of options which maximize the patient’s future opportunities and choices.” British Medical Association, 2006. The Law & Ethics of Male Circumcision: Guidance for Doctors.

17 General problems with proxy consent: Risk of surrogate making decisions for another based on their own concerns and values. Surrogate has no intrinsic motivation to fully consider the impact of a medical decision made for another. Surrogates do not always make the decisions that their wards would have chosen, esp. with elective interventions

18 Problems with pediatric proxy consent Parents do not own the child, rather guardians. Proxy consent Appropriate for cases of actual medical need. Not valid for non-therapeutic procedures? The child is the patient: “Pediatric health providers… have legal and ethical duties to their child patients to render competent medical care based on what the patient needs, not what someone else expresses.” AAP Ethics Committee, 1995. Informed consent, parental permission and assent in pediatric practice.

19 AAP Circumcision Position Statement, 1999: Ethics Section “In cases such as the decision to perform a circumcision in the neonatal period, when there are potential benefits and risks and the procedure is not essential to the child’s current well-being, it should be the parents who determine what is in the best interests of the child.” No mention of the rights of the child.

20 However… AAP Proxy Consent statement, 1995 “Parents should not exclude children and adolescents from decision-making without persuasive reasons.” “A patient’s reluctance or refusal to assent should carry considerable weight when the proposed intervention is not essential to his or her welfare and/or can be deferred without substantial risk.” AAP (1995). Informed consent, parental permission, and assent in pediatric practice.

21 Compare AAP to… Royal Dutch Medical Association, 2010 “Insofar as there are medical benefits, it is reasonable to put off circumcision until the age at which such a risk is relevant and the boy himself can decide about the intervention, or can opt for any available alternatives.” “Non-therapeutic circumcision of male minors is contrary to the rule that minors may only be exposed to medical treatments if illness or abnormalities are present, or if it can be convincingly demonstrated that the medical intervention is in the interest of the child…” “Non-therapeutic circumcision of male minors conflicts with the child’s right to autonomy and physical integrity.” Royal Dutch Medical Association (KNMG), 2010. Non-therapeutic Circumcision of Male Minors.

22 ETHICS SUMMARY: Cultural comparisons ETHICS IN MEDICAL ORG POSITION STATEMENTS Netherlands (KNMG) 2010 Australia / NZ (RACP) 2010 United Kingdom (BMA) 2006 British Columbia (CPSBC) 2009 Canada (CPS) 2002 USA (AAP) 2002 USA (AAFP) 1999 Parents’ choice xxxx Child as stakeholder xxxx Ethical problems acknowledged xxxxx Legal problems acknowledged xxx Conscientious objection acknowledged xxx Comparison to FGM xx

23 Question #2: Q: Who is the appropriate person to give permission for elective, nontherapeutic cutting of anyone’s genitals? A: The owner of the penis, i.e. the male himself, when he is old enough to give his own informed, voluntary consent. No ethical problem with circumcision of consenting, adequately informed adults.


25 PARENTS’ VOICES “I really, honestly, don't think I will ever forgive myself for letting this happen to him.” “ If only ONCE someone had mentioned that it wasn ’ t medically necessary... I know I would have questioned it. But no one did… ” “It was an assault on him, and on some level it was an assault on me… I will go to my grave hearing that horrible wail…”

26 PARENTS’ VOICES: “If only I had known …” That it would affect breastfeeding. That it would look so gruesome. That it would affect the sensitivity of the penis. That the foreskin had a purpose. That there is a risk of death. That I might possibly regret it so seriously. Never thought that he might not want to be circumcised.

27 INFORMED CONSENT The patient’s right to agree to, or refuse, a proposed medical intervention, based on an adequate understanding of the implications of his decision Ethical foundation: Respect for the self-determining dignity of the individual Practical purpose: Supports the patient’s interest in rational decision- making through access to information

28 The Elements of Valid Informed Consent Competence Voluntariness Informed Understanding

29 DISCLOSURE: Required content Nature of the health problem Nature of the proposed procedure Benefits Risks Alternatives The more elective the proposed procedure, the higher the level of disclosure required

30 “The process of informed consent for circumcision is inadequate.”* PROCESS: Practitioners’ survey: Nearly half of those who performed circs did not discuss before birth Of those who performed circs and provided prenatal care, 26% did not discuss before birth Mothers’ survey: 29% discussed with OB before birth, 28% discussed with pediatrician 25% (up to 37% in other surveys) reported they did not receive enough info to make their decision about circumcision CONTENT: No info given on the alternative of not circumcising * Ciesielski-Carlucci C, Milliken N, Cohen NH. Determinants of decision making for circumcision. Camb Q Healthc Ethics 1996;5:228-236.

31 Inadequate Disclosure: COMPLICATIONS Surveys of disclosure of complications Parents typically informed only of risks of pain, infection, bleeding. 60+% do not mention possibility of damage to other parts of the penis 92% do not mention death Christensen-Szalanski JJ, Boyce WT, Harrell H, Gardner MM. Circumcision and informed consent: Is more information always better? Med Care 1987; 25(9):856-867. Fletcher C R. Circumcision in America in 1998: Attitudes, beliefs, and charges of American physicians. In: Male and female circumcision: Medical, legal, and ethical considerations in pediatric practice. New York: Kluwer Academic/Plenum Publishers, 1999.

32 Inadequate Disclosure: ALTERNATIVES Longley (2009): Content analysis of parent circumcision info handouts for content on the alternative of not circumcising. Content found relevant to topic of not circumcising: Anatomy, protective function, sexual function Care and development of intact penis Framing of intact penile hygiene Counter-information given for medical and social claims Ethics of neonatal circumcision Circumcision not practiced in most societies Normalizing terms

33 Adequacy of disclosure on alternative of not circumcising (max. score = 12)

34 Inadequate Disclosure: FRAMING FRAMING: How a story is told affects how the information is perceived. E.g. Relative risk vs. absolute risk E.g. Negatively framed messages on intact hygiene E.g. Omission of relevant information Framing constitutes informational manipulation. Violates disclosure and voluntariness standards of valid informed consent..

35 Informed Consent for Neonatal Circumcision: A CAVEAT Proper informed consent does not make circumcision of children ethical. However: It gives parents the opportunity to make a truly informed decision. It forces health professionals to themselves be more informed.

36 HEALTH PROFESSIONALS’ VOICES “I did not become a nurse to hurt babies. In 1992, I gave notice to my employers that I would no longer be an accomplice in the atrocity that is infant circumcision. I have reclaimed my tattered soul and begun the process of becoming whole again.”

37 CONSCIENTIOUS OBJECTION Right to conscientious objection acknowledged by: British Medical Association Royal Australasian College of Physicians and Surgeons College of Physicians and Surgeons of British Columbia Doctors Opposing Circumcision Barriers to conscientious objection: Lack of education among health professionals Lack of ethical leadership by AAP Lack of institutional support Fear of losing patients Fear of inconveniencing colleagues Fear of sticking one’s neck out “Doctors are under no obligation to comply with a request to circumcise a child.”

38 Other ethical issues: Inadequate pain relief Physicians soliciting for unnecessary surgery Commercial use of amputated foreskin tissue Religious rights vs. child’s rights And others….

39 The Ethics of Neonatal Circumcision: Problems and Pathways to a more ethical future EDUCATION CULTURE GENDER

40 THE END “Ethics points us to corrective vision, i.e. to question practices that have become routine, or which we take for granted.” - College of Physicians and Surgeons of British Columbia, 2009.

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