Teaching MCH Ethics
Kay M. Perrin, PhD, MPH, RN
University of South Florida
College of Public Health
APHA, November 2004
TEACHING MCH ETHICS
• MCH Competencies
• Historical background as a foundation
of medical ethics
• Major ethical principles
• Development of ethical morals and
values
• MCH case studies
• Discussion and reflections
MCH COMPETENCIES
MCH Professionals should have knowledge and
understanding of:
• The philosophy, values, and social justice
concepts associated with public health
practices in MCH
• The principles and issues involved in the
ethical conduct of practice and research
within MCH populations, organizations,
agencies including data collection,
management, analysis and dissemination
• The philosophical concepts and
rationale underlying the delivery of
family-centered, comprehensive,
community-based and culturally
competent MCH programs including
community assets
MCH Professional should be able to
demonstrate the following skills:
• Ethical conduct in practice, program
management, research, and data collection
and storage
• Promotion of cultural competence concepts
within diverse MCH settings
• Ability to build partnerships to foster
community empowerment, reciprocal learning
and involvement in design, implementation,
and research aspects of MCH programs
HISTORICAL BACKGROUND
Nuremberg Code of 1947
Helsinki Declaration of 1964
1974 U.S. Federal Regulations:
“National Commission for the
Protection of Human Subjects of
Biomedical and Behavioral
Research”
1920:
Permission to Destroy Life
Unworthy of Life
Doctors should be allowed to kill:
• Terminally ill or mortally wounded
• “incurable idiots” whose lives are
viewed as pointless or valueless with an
emotional or economic burden on family
• “Unconscious” who would waken to
nameless suffering
1924: Carrie Buck
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Poor, powerless, daughter of a prostitute
Pregnant out-of-wedlock by foster father
Mother in jail; baby not “quiet normal”
“3 generations of idiots is enough” (Justice
Oliver Wendell Holmes)
• In U.S. 60,000 people legally, involuntarily
sterilized between 1907 and 1960
1980s:
Dehydrating Cognitively
Disabled Persons
• 1st: Dehumanized persons
• 2nd: Gave moral permission to families
and doctors to withdraw basic
sustenance
• 3rd: Urged courts to make dehydration
a legal “right to die”
• Today: Causing death by dehydration is
legal in all 50 states
MAJOR ETHICAL PRINCIPLES
• Beneficence
• Justice
• Utilitarianism
• Confidentiality
• Autonomy / Informed Consent
Beneficence
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•
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Do not harm
Maximize possible benefits
Minimize possible harm
Direct benefit to subject
Overall benefits to society
Justice
• Fair distribution of benefits
– Equal
– Equal
– Equal
– Equal
– Equal
shares
individual need
individual effort
societal contribution
merit
Utilitarianism
• Acknowledges that the pains of some
may have to be accepted in particular
situations in which the best realization
of value for everyone affected makes
them unavoidable
• Greatest good for the greatest number
Confidentiality
• The importance of the patient being able to
trust their health care provider to not reveal
personnel and private information without the
person’s permission
• Goal: Accurate diagnosis depend on a
complete history
• Goal: Society benefits, such as with reported
diseases, by protecting others
Justification of confidentiality breach
• A threat to the patient
• A threat to other unidentified persons
• A threat to some other specific
individual
– EX: Child abuse and specified contagious
diseases
• When benefits from the breach
outweigh the “wrong” to the patient
Reportable Diseases in Maryland
AIDS
Amebiases
Animal bites
Anithrax
Arbovirals
Botulism
Brucellosis
Cholera
Coccidiodomycosis
Cryptosporiasis
Dengue fever
Diptherea
Ehrlichiosis
Encephalitis
Epsilon toxin
Giardiasis
Glanders Conococcal infection
Heamophilus influenza
Hepatitis
Isosporiasis
Kawasaki syndrome
Legionellosis
Leporsy
Leptospirosis
Listeriosis
Lyme disease
Malaria
Measles (rubeola)
Meningitis, infectious
Meningococcal
Microsporidiosis
Mumps
Mycobacteriosis
Pertussis
Pesticide related illness
Plague
Pneumonia in a health care
worker
Polionyelitis
Psittacosis
Q fever
Rabies
Ricin toxin
Rocky Mountain spotted fever
Salmonellosis
Septicemia in newborns
SARS
Shigellosis
Smallpox
Staphlococcal B
Strep A and B
Syphilis
Tetanus
Trichinosis
Tuberculosis
Tularemia
Typhyoid fever
Varicella – fatal cases only
Vibiosis
Viral hemorrhagic fevers
Yellow fever
Yersiniosis*
(Dept of Health, Maryland 2004)
Autonomy
• Freedom to make individual choices
• Given adequate information
By building on the definitions of these
basic ethical principles, we are led into
a discussion about informed consent…
Informed Consent
A process involving discussion between a
provider and a patient.
It is not the “signing of a consent form.”
Elements of Informed Consent
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•
•
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Diagnosis
Nature of the proposed treatment
Purpose of the proposed treatment
Risks and side effects of the proposed
treatment
• Probability that the proposed treatment
will succeed
• Alternatives to the proposed treatment
– Fore each alternative, discuss its risks and
benefits
– Consequences of “no treatment” should
always be discussed
• “Exceptions” to informed consent
– Emergencies – if there is no time to get a person’s
consent, but it is likely that they would have
consented
– Therapeutic Privilege – a provider’s determination
that knowing the complete truth might harm the
patient; rarely used
– Incompetent Patients – since the patient cannot
consent, one must find out who is authorized to
consent on their behalf
Physician:
Legal Standard of
Informed Consent
• As a legal standard, informed consent is
imposed retrospectively
• Courts are involved only after a malpractice
suit is filed
• Prospective review is not conducted, because
such review would be intrusive into the
professional relationship of physician and
patient
• Goal: patient’s well-being
Researcher: Legal Standard of
Informed Consent
• The researcher is subject to prospective
and continuing review requirements,
including explicit and detailed standards
for the information disclosed
• Goal: Gather evidence or data for
testing a hypothesis with a goal of
advancing scientific knowledge rather
than benefiting the subject
Additional information for research
protocols when obtaining informed
consents
• A description must be given of the
confidentiality of research records and
data
• An explanation must be given of the
availability or unavailability of
compensation or treatment for injury
• Identification must be made of whom to
contact for answers regarding the
conduct of the research and the
subject’s rights as well as whom to
contact in the event of an injury
• An explanation must be given of the
subject’s rights to refuse participation
and to withdraw from the study
• Information regarding currently unforeseeable risks
• Reasons why an investigator might expel a subject
from a study
• Identification of additional costs to the subject
incurred as a result of participation in the study
• Consequences of the subject’s withdrawal from the
study
• Information about pertinent findings
• Information about the number of subjects
participating in the research
DEVELOPMENT OF ETHICAL MORALS
AND VALUES
• Good ethics begin with good facts
• Ideally, discussing case studies results in:
– Some narrowing of disagreements and differences
– Some knowledge gained
• It is not always easy to discern the right
answer to an ethical problem, but it is often
easy to identify a wrong answer
– Bad facts, failure to consider alternatives, or
inconsistent reasoning
MCH CASE STUDIES
Four questions for each case study:
• Uncertainty about the utility and safety of the
research / technique / treatment
• Moral uncertainty about the justifications for
the research / technique / treatment
• Conceptual uncertainty about the “patient it
serves
• Social uncertainty about its long-term effects
EXAMPLES OF MCH CASE STUDIES
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Circumcision
Women in research – or not
Prenatal testing
Behavior of pregnant women
Designer babies
Abortion and embryo adoption
Conflicts of interest among pharmacists
Circumcision
• March 1999 – AAP concluded that the health
benefits of this practice do not justify routine
circumcision
• 1970 – AAP no medical indication
• 1989 – AAP concluded potential benefits
• If we allow this risk to children to meet the
“cultural” or “religious” need of parents, how
do we determine when other cultural needs
should triumph?
• Comparison of pediatric data with women’s
health data = conflicting results
Women in research – or not?
• Baltimore Longitudinal Study (started in
1958) no women for first 20 years
• Physician's Health Study – 22,000 men and
no women (Harvard Aspirin study)
• 1982 Multiple Risk Factor Intervention Trial
(Mr. FIT) – 13,000 men and no women
• Harvard – caffeine and heart disease study –
45,000 men and no women
• Framingham Study – longitudinal study with
no women
Continued
• 1908 – heart disease is one of the bestkept secrets of women’s health
• 1964 – American Heart Assoc. first
conference on women and heart
disease
– Title: Hearts and Husbands: The First
Women’s Conference on Coronary Heart
Disease – “How to Care for Your Man”
– No discussion about self-care
Continued
• 1950 – thalidomide and DES - meant that no
woman between the ages of 15 and 50 could
no longer participate in new drug research
unless she had been surgically sterilized
• However, researchers did not exclude men
even though Proscar, a drug used to treat
enlarged prostate glands, was found to cause
birth defects; men sign a statement saying
that they would use condoms
• Implication: women have no control over
their reproductive lives
Prenatal testing
• Right of prospective parents to reproduce
children with genetic anomalies vs. the moral
duty not to “knowlingly” reproduce an
affected child
• The future person’s right to not be born with
genetic anomalies outweighs the prospective
parents’ right to give birth
• The harm to the child, family and society-atlarge have an impact on the moral
acceptability of these decisions
Behavior of pregnant women
• Increasingly, the fetus is seen as a
medical patient in its own right – a
patient whole quality of life can only be
protected by recognizing its individual
interests
• When the woman’s behavior is seen has
harmful, does society have a right to
control her behavior?
Designer babies (gender selection)
• PGD (Pre-implementation Genetic Diagnosis)
allows physicians to screen embryos for a
wide range of possible diseases as well as for
gender. Suitable embryos can then be
implanted, while the future parents may
decide not to implant other embryos. These
other embryos may be destroyed or given to
other infertile couples, where they will be
implanted in the woman and brought to term.
Abortion or embryo adoption
• Ever since it became possible to freeze embryos as
part of the process of assisting in reproduction,
doctors and couples have faced a growing problem:
What to do with the frozen embryos?
• Save embryos for second attempt?
• Donations akin to organ donations?
• Legal screening as with adoptions?
• Erosion of abortion laws if embryos are viewed the
same as adoptions?
• Sharing information with child later for medical
purposes?
Conflicts of interest among pharmacists
• Most pharmacists who work in retail pharmacies have
a serious potential conflict of interest. On the one
hand, they are professionals, expected to be
knowledgeable about drugs and to dispense them in
a responsible and ethical manner. On the other hand,
their income depends on the sale of products. Before
the FDA's OTC (Over-the-Counter) Drug Review
drove most of the ineffective ingredients out of OTC
drug products, few pharmacists protected customers
from buying products that did not work.
• Do MCH professionals ever profit (grants, data,
tenure) at the expense of patients?
Issues related to research at
universities
• Universities being driven by research
dollars rather than teaching evaluations
• Relentless time and financial constraints
to produce data for funding source
• Teaching hospitals often represent a
place where vulnerable populations with
specific medical conditions are brought
together in one location
Watchdog citizen group tracking
unethical medical research
CIRCARE:
Citizens for Responsible Care
and Research
veracare@erols.com
DISCUSSION AND REFLECTION
“We in the U.S. don’t have systemic
atrocities, we have compartmentalized
atrocities. But the intellectual
underpinnings for the good of science;
for the advancement of knowledge; for
the benefit of society; for the national
interest” (Biomedical ethicist at the Maryland
School of Medicine)
Example: Baby Doe (U.S.)
• Down’s syndrome and parents refused
surgery; ordered doctors to withhold
food and fluids thus dooming her to
death
• If a “normal” child were neglected to
death, parents and doctors would be
charged with child abuse and murder
Surgeon General Koop
“The greatest protection that disabled
newborns have in the U.S. is the concern on
the part of the doctors who care for the
newborns that someone is watching;
considering the increasingly utilitarian state of
medical ethics and the pressures placed on
doctors by managed care companies to cut
the costs of health care, that protection may
be scant indeed.”
Peter Singer
• “Infants have no moral right to live”
• “Infanticide at the request of the parents is
ethical so long as it toll promote the overall
interests of the family and society”
• “Instead of going forward and putting all our
efforts into making the best of the situation,
we can still say no, and start again from the
beginning.”
• Rethinking Life and Death: The Collapse of
Our Traditional Ethics (his book)
What can we do to improve the value
system in institutions?
• More effort must be made to integrate values
into the social fabric of the institution:
supportive, compassionate, thoughtful.
• Greater emphasis on learning and less on
evaluation to decrease cheating and
dishonesty.
• Engage faculty and students in a series of
discussion regarding the ethical foundations
and core values of the professionalism
Conclusion
• Public health cannot compromise on value
systems
• “Teaching values is particularly difficult when
education has become a trade with lots of
money involved” (Sheriff and Manopriya, 2000).
• Students learn a professional value system as
it is portrayed by the institution they attend
and by the faculty attitudes towards each
other and towards their profession.
Thank you
Any comments?