Presented by Gillian Longley RN, BSN, MSSUniversity of Nevada Las Vegas, November 2011

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

KEY QUESTIONS1. 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?

OUTLINEPrinciples of medical ethics and human rights

Ethics of common arguments for circumcisionMedical benefits rationalesParents’ vs. child’s rights

Informed consent

Conscientious objection of health professionals

Pathways to a more ethical future

Four Principles of Medical Ethicsin 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?

Human Rights: Key DocumentsUniversal 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!

Human Rights: Key Principlesand 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.

Other medical ethics sourcesAMA 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.

“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

“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

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.

Pathologizing the foreskin

MEDICAL JUSTIFICATIONSA 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.

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.

PARENTS’ “RIGHTS” vs. CHILD’S RIGHTS

Parents given wide latitude on childrearing decisions

Children not considered competent to make medical decisions for themselvesParents as proxy/surrogate decision-makers

“Best Interests”:Deciding for Children

Factors in determining “best interests”Maximizing benefits while minimizing harmsConsider both physical and emotional needsLeast restrictive and least intrusive way to obtain

desired benefitsFamily’s views and socio-cultural backgroundPatient’s own ascertainable wishes, feeling, and valuesBMA: “… 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.

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

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.

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.

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.

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.

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.

“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…”

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.

INFORMED CONSENTThe 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

The Elements of Valid Informed Consent

Competence

Voluntariness

Informed

Understanding

DISCLOSURE: Required contentNature of the health problem Nature of the proposed procedureBenefitsRisksAlternatives

The more elective the proposed procedure, the higher the level of disclosure required

“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.

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.

Inadequate Disclosure: ALTERNATIVESLongley (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

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

Inadequate Disclosure: FRAMINGFRAMING:

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.

.

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.

“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.”

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.”

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….

The Ethics of Neonatal Circumcision:Problems and Pathways to a more ethical future

EDUCATION

CULTURE

GENDER

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.