Ethics of Assisted Reproductive Technologies Rfs
Ethics of Assisted Reproductive Technologies Rfs
Reproductive Technologies
(ART)
Lisa Campo-Engelstein, Ph.D.
Associate Professor
Alden March Bioethics Institute & Department of OBGYN
Albany Medical College, NY
[email protected]
Learning objectives
Argument 1 Argument 2
• Premise 1: All eagles can fly. • Premise 1: Some people like
• Premise 2: I am an eagle. to eat fish.
• Conclusion: I can fly. • Premise 2: Some bears like
to eat fish.
False premise, valid • Conclusion: Some people
reasoning are bears.
http://tomkow.typepad.com/tomkowcom/2011/04/trolleyproblems.html
Deontology
(Kantian ethics)
• An action is good if it
adherence to a rule or duty
– Concerned with intention,
not consequences
• “Golden rule”
• Dignity requires treating people
as ends in themselves, not
merely as means to an end
Four bioethics principles
• Respect for autonomy
– Respect autonomous decisions
– Protect those without capacity
• Nonmaleficence
– Do no harm
• Beneficence
– Relieve, lessen, or prevent harm
– Provide benefits and balance benefits against risks and
costs
• Justice
– Equal and fair distribution of resources
Negative vs. positive rights
• Negative rights: the right from something;
basically the right to be left alone and not
to be interfered with
– Right to bodily integrity
– e.g. right to refuse treatment
• Positive rights (entitlement rights): the right
to something
– Entail duties from others
– Often contentious
– e.g. right to healthcare
DEFINING INFERTILITY
What is infertility?
• In the U.S. the standard definition is not
achieving pregnancy after one year of
regular unprotected heterosexual
intercourse for women under 35. For
women over 35, the timeframe reduces
to 6 months.
Definitions of infertility by organization
Organization Definition of Infertility
• men
• anticipated infertility
• social infertility
Minimizes men’s infertility
• Men and women equally likely to be
infertile
• Historical and cultural belief that
women are more likely to be infertile
• More inclusive definition: “Infertility is the
result of a disease … of the male or female
reproductive tract which prevents the
conception of a child or the ability to carry
a pregnancy to delivery.” ASRM
Anticipated infertility
• Not currently trying to conceive, but
have foreseeable infertility
– individuals with cancer or other medical
conditions
– individuals who are transgender or have
differences of sex development
– women who experience age-related
infertility
• Usually not covered by insurance
Social infertility
• People can be infertile because of
who their partner is or because they
don’t have a partner
• The WHO recently changed their
definition of infertility to include
lesbian and gay couples and single
individuals
• Lesbian couples suing NJ because
of the requirement to have
heterosexual intercourse in order to
“prove” infertility
Lo, W., and L. Campo-Engelstein. “Expanding the Clinical Definition of Infertility to Include Socially Infertile Individuals and Couples” in
Reproductive Ethics: New Ideas and Innovations (2018). https://www.nj.com/essex/index.ssf/2016/08/lesbian_couples_sue_nj_say_fertility_laws_discrimi.html
Misperceptions about
who is infertile
• Perception: people who are infertile are
generally white, middle-class, educated
people who have chosen to delay
childbearing
– These individuals are the most likely to
use ART.
• Reality: people who are infertile are
typically people of color, poor, less
educated, and within their prime
childbearing years
Barut, M. U., et al. (2016). "There is a Positive Correlation Between Socioeconomic Status and Ovarian Reserve in Women of Reproductive
Age." Medical Science Monitor : International Medical Journal of Experimental and Clinical Research 22: 4386-4392.
Bell, A. V. (2014). Misconception: Social Class and Infertility in America, Rutgers University Press.
Is infertility a disease?
• Public says no • Medicine says yes
– 72.2% in one study • Infertility is an
• Infertility treatment aberration of
does not treat an “normal” functioning
underlying disease • Infertility can lead to
but rather produces psychological
a desired outcome problems
(i.e. a child).
Ho, J. R., et al. (2017). "Public attitudes in the U.S. toward insurance coverage for IVF and the provision of infertility services to lower income
patients." Fertility and Sterility 108(3): e9.
GENERAL ETHICAL
ISSUES WITH ART
What types of regulation
should be required for ART?
Regulation comparison
USA UK
• Limited governmental
oversight
– FDA regulates human
reproductive tissue
– Federal Clinic Success – Governmental agency
Rate and Certification regulating fertility
Act of 1992 treatment and research
– Legality of surrogacy
varies by state
• ASRM provides
guidance
Who should pay for ART?
Classification of infertility
Individuals should pay Insurance should pay
• ARTs are not medically • Much of medicine today
necessary is focused on improving
• There are other ways to quality of life
build a family (e.g. • Justice demands treating
adoption) infertility like other
medical conditions
• Genetic parenthood as a
right
Financial
Individuals should pay Insurance should pay
• ARTs are expensive • Expense of ARTs unfairly
• There are more important burdens individuals
health needs that could • ARTs account for only
help more people 0.06% of the total health
care expenditure in the
US
Chambers GM, Sullivan EA, Ishihara O, Chapman MG, Adamson GD. The economic impact of assisted reproductive technology: a review of selected
developed countries. Fertility and Sterility. 2009;91(6):2281–2294
How should we ethically
understand and legally
classify embryos?
Embryos
NY Post Headline: Black Baby Born To Lawsuit states: "On August 21, 2012, Jennifer
White Pair gave birth to Payton, a beautiful, obviously
mixed-race baby girl. Jennifer bonded with
“A Park Avenue fertility clinic’s blunder Payton easily and she and Amanda love her
has left a family devastated – after a very much. Even so, Jennifer lives each day
black baby was born to a Hispanic with fears, anxieties and uncertainty about her
woman and her white husband, the future and Payton's future."
couple charges in a lawsuit.”
Campo-Engelstein, L., L.B. Santacrose, Z. Master, and W.M. Parker. “Bad Moms, Blameless Dads: The Portrayal of Maternal and
Paternal Age and Preconception Harm in U.S. Newspapers.” American Journal of Bioethics Empirical Bioethics 7.1 (2016).
Too young for ART?
• Is there any age that is too young to
offer ART?
Minors and fertility
preservation
• Assent/consent
• Best interest standard
• Parental and provider pressure
• Cost and insurance coverage
• Experimental treatment
Campo-Engelstein, L. and D. Chen. “Ethical Issues in Pediatric and Adolescent Fertility Preservation” in Pediatric and Adolescent
Oncofertility, eds. T.K. Woodruff and Y.C. Gosiengfiao (2017).
McDougall RJ, Gillam L, Delany C, et al. Ethics of fertility preservation for prepubertal children: should clinicians offer procedures
where efficacy is largely unproven? Journal of Medical Ethics 2018;44:27-31.
What social and ethical issues
are raised by multifetal
pregnancies?
Evans, M.I., et al., Fetal reduction from twins to a singleton: a reasonable consideration? Obstet Gynecol, 2004. 104(1): p. 102-9.
Dramatic increase in multiples
Live Birth Rate by Number of IVF
Embryos Transferred
2007 Assisted Reproductive Technology Success Rates, Centers for Disease Control and
Prevention and American Society for Reproductive Medicine, Figure 33, December 2009.
Public fascination
with multiples
• Heroic nature of medicine
• Fascination with medical “freaks”
• White, heterosexual, Christian couples
receive positive media attention
– Upholds dominant cultural beliefs: pro-
natalist, traditional gender norms, Christian
faith, pro-life
McCaughey
Septuplets
• Bobbi McCaughey used
fertility drugs and gave birth
to septuplets in 1997
• The parents received a
donated 16-room house, a
15-passenger van, baby
food from Gerber, a lifetime
supply of Pampers from
Procter & Gamble, and a
call from President Clinton
• Religious Christian, pro-life
white heterosexual couple
who already had a 2 year
old biological daughter
Chukwu Octuplets/Septuplets
• After using fertility drugs,
Nkem Chukwu gave birth to
octuplets in 1998. One of the
babies died shortly after birth
• The family lives in a donated,
six-bedroom suburban home,
and the stay-at-home mom
had a small army of volunteers
help feed and care for the
seven surviving babies for the
first few years
• Religious heterosexual black
couple born in Nigeria and
now living in Texas who didn’t
have any other children
Gosselin Twins and Sextuplets
• Using fertility drugs, the Gosselins had twins (2000)
and sextuplets (2004)
• Before fame they had help from their community,
especially their church; gained fame through their TV
show and then received many gifts and
endorsements
• Religious Christian, pro-life heterosexual couple
Quints by Surprise Raising Sextuplets
Campo-Engelstein, L. “Common Ethical Issues in Oncofertility” in Oncofertility Research and Practice: A Multidisciplinary Approach,
ed T.K. Woodruff (2019).
Should insurance companies cover
oncofertility?
• Arguments for covering ARTs
• Cancer patients often only have one shot at
preserving their fertility
• Infertility is iatrogenic
Justice and iatrogenic conditions
• Treatments to prevent potential iatrogenic
conditions are usually covered by insurance
– Storing one’s own blood in case of an
emergency transfusion
– Breast reconstruction after lumpectomy or
mastectomy
• Infertility and breast loss or asymmetry are both
iatrogenic conditions that are often not considered
medically necessary when naturally occurring
Campo-Engelstein, L. “Consistency in Insurance Coverage for Iatrogenic Conditions Resulting from Cancer Treatment Including Fertility
Preservation.” Journal of Clinical Oncology 28.8 (March 10, 2010).
Fertility Preservation Coverage Legislation 2017-2018
Stat Bill Status Structure Proposed Coverage
e
CT HB7124 Signed into law 6/20/17 Medically necessary Changed statutory definition of “infertility” to include “medical necessary” treatment; amended
existing IVF mandate
RI S 0821A & H Signed into law 7/05/17 FP for iatrogenic Standard FP services if necessary medical treatment may cause iatrogenic infertility; amended
6170A infertility existing IVF mandate
MD SB271 & Signed into law 5/18/18 FP for iatrogenic Standard FP services if necessary medical treatment may cause iatrogenic infertility; large groups
HB908 infertility only
DE SB139 Signed into law 6/30/18 IVF+FP New infertility mandate, includes IVF and FP. Coverage for specifically delineates infertility
treatments, including IVF and FP. Doesn’t include state employees or state Medicaid recipients
IL HB2617 Signed into law 8/27/18 FP for iatrogenic Standard FP services if necessary medical treatment may cause iatrogenic infertility; broad coverage
infertility including state employees and state Medicaid recipients
NJ A3150 & Pending FP for iatrogenic IVF mandated was updated in 2017; FP to be added in 2018
S2133 infertility
AZ SB1149 Intro in Senate; Inactive IVF+FP (iatrogenic) IVF mandate; specific procedures listed; includes FP
CA SB172 Heard in Sen. Health Cmte; FP for iatrogenic Standard FP services if necessary medical treatment may cause iatrogenic infertility
Inactive infertility
HI HB2669 Heard in House HHS Cmte; FP-cancer only Oocyte, and sperm cryo for adult patients dx w/cancer; have not started treatment. Limit: one cycle
Deferred; Inactive
KY SB95 Passed Senate; Inactive FP for iatrogenic Coverage includes procedures for ooctye & sperm banking; one year of storage; lifetime limit of one cycle
infertility
LA HB698 Hearings in House; sent to FP-cancer only Coverage for embryo, oocyte, and sperm cryopreservation; limited to 18-40 yrs old; dx of cancer only; has
Cmte on Approps for not started cancer treatment. Limit: one cycle
reconsideration; Inactive
MS HB1198 Died in Cmte; Failed IVF+FP (iatrogenic) IVF mandate; specific procedures listed; includes FP
MO HB2388 Referred to House Judiciary FP-cancer only Coverage for embryo, oocyte, and sperm cryopreservation; limited to 18-40 yrs old; dx of cancer only; has
Cmte; Inactive not started cancer treatment. Limit: one cycle
NY A02646A & A02646A passed Assembly IVF+FP (iatrogenic) Update existing infertility mandate to include IVF and fertility preservation for iatrogenic infertility
S3148 2017 & 2018; S8441b passed
S8441b Senate, 6/20/18; Inactive
S7163 & Sent to Cmte in both chambers; FP for iatrogenic Coverage for standard fertility treatment when a necessary cancer treatment may directly or indirectly
A10660 Inactive infertility due to cancer cause iatrogenic infertility
treatment
VT H629 Referred to Cmte on FP-cancer only Coverage for embryo, oocyte, and sperm cryopreservation; limited to 18-40 yrs old; dx of cancer only; has
Healthcare; Inactive not started cancer treatment. Limit: one cycle
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Rudick, B., et al. (2010). "The status of oocyte cryopreservation in the United States." Fertil Steril 94(7): 2642-2646.
Change in ASRM guidelines
• “The Ethics Committee previously supported OC for
women facing immediate, medically induced loss of
fertility. But there are many less-immediate
developments that could also threaten women's
ability to have children in the future. These
developments include diseases, primary ovarian
insufficiency, traumatic injury, planned female-to-
male gender transition, and the fertility loss that
occurs as a woman ages. Planned OC may also
benefit women seeking children in response to
unanticipated future events such as remarriage or the
death of an existing child.”
(2018). "Planned oocyte cryopreservation for women seeking to preserve future reproductive potential: an
Ethics Committee opinion." Fertil Steril 110(6): 1022-1028.
ASRM supports planned OC
• “For all stakeholders who provide and use planned
OC, caution is warranted. There is a risk of misplaced
confidence in the effectiveness of this procedure, as
well as scientific unknowns concerning long-term or
transgenerational offspring health. Mindful of these
cautions, however, this Committee finds the use of
OC for women attempting to safeguard their
reproductive potential for the future to be ethically
permissible.”
(2018). "Planned oocyte cryopreservation for women seeking to preserve future reproductive potential: an
Ethics Committee opinion." Fertil Steril 110(6): 1022-1028.
ESHRE ASRM
Bhatia, R., and L. Campo-Engelstein. “The Biomedicalization of Social Egg Freezing: A Comparative Analysis of European and
American Professional Ethics Opinions and U.S. News and Popular Media.” Science, Technology, & Human Values 43.5 (2018).
ESHRE’s statement
• ESHRE states that SEF should be made
available to women who, facing “the threat of
time” desire to cryopreserve their own eggs in
order to “give them more breathing space.”
• ESHRE advises against “a paternalistic
attitude” that would decide for a potential patient
how “the importance of keeping open the
prospect of having children later in their
lives…weighs up to the burdens and risks of
repeated stimulation and oocyte-pick up.”
ESHRE Task Force on Ethics and Law. 2012. Oocyte cryopreservation for age-related fertility loss. Human Reproduction 27 (5): 1231-37.
ESHRE and autonomy
• ESHRE supports SEF for women due to conditions
“beyond their own control.”
– “Fertility preservation for women at risk of disease related or
iatrogenic premature menopause clearly falls within the
scope of reproductive medicine. The same can arguably be
said of fertility preservation for women who want to have
children and are still without a partner at the age of 35.
Their request is understandable, given that there is a
reasonable chance beyond their own control that they
will remain childless.”
– “But what about requests from women who deliberately
choose to postpone childbearing while giving temporary
priority to other life goals such as build-up of a career? …
The postponing ‘career woman’ is not so deviant a
character as many seem to think.”
ESHRE and justice
• “For men, the combination of fatherhood with
other life plans is not as difficult. Not only do
they tend to leave most of the burdens of
daily care to their partners, but they also have
the opportunity to reproduce until much later
in their lives. Moreover, men already can have
their sperm cryopreserved.”
• “From a feminist perspective, therefore, the
availability of options for female fertility
preservation can be regarded as an important
step towards greater reproductive justice.”
Statist pronatalist
(2018). "Planned oocyte cryopreservation for women seeking to preserve future reproductive potential: an
Ethics Committee opinion." Fertil Steril 110(6): 1022-1028.
Media Marketing
(2018). "Planned oocyte cryopreservation for women seeking to preserve future reproductive potential: an
Ethics Committee opinion." Fertil Steril 110(6): 1022-1028.
Planned OC (social egg freezing)
in US newspapers
Code % Articles
Campo-Engelstein, L., R. Aziz, S. Darivelmula, J. Raffaele, R. Bhatia, and W.M. Parker. “Freezing Fertility or Freezing False Hope? A Content
Analysis of the Portrayal of Social Egg Freezing in the US Print Media.” American Journal of Bioethics Empirical Bioethics (2018).
Planned OC as a workplace
benefit
(2018). "Planned oocyte cryopreservation for women seeking to preserve future reproductive potential: an
Ethics Committee opinion." Fertil Steril 110(6): 1022-1028.
Medical concerns with
planned OC
• Invasive
• Side effects
• Not guaranteed
– Avoid language of “insurance”
Economic concerns with planned OC
Expensive and not covered by insurance Reproductive medicine
is a for profit market in
the US
• Review of 387
websites of fertility
clinics found that the
majority of websites
rated “poor” in their
adherence to ASRM
guidelines on
planned OC, with an
average score of 3.4
out of a 13 point
scale
Avraham, S., et al., 2014. What is the quality of information on social oocyte cryopreservation provided by websites of
Society for Assisted Reproductive Technology member fertility clinics? Fertility and Sterility
Social concerns with SEF
• Medical solution to social problem
– Doesn’t help women find partners
• Puts burdens and blame on individual
women
– Shift from option to obligation
What ethical issues are raised by
preimplantation genetic diagnosis
(PGD)?
Preimplantation genetic
diagnosis (PGD)
• Genetic profiling of embryos prior to
implantation generally used to prevent
certain diseases from being passed on
to the child
• Concerns about devaluing disabled
lives
• Concerns about blurring the line
between therapeutic and enhancement
– “Designer” babies
• Concerns about social justice and
GATTACA future
Is sex selection ethically
permissible?
Sex selection
• Using sperm sorting, PGD, or
abortion to determine the sex
of future offspring
• Concern about cultural
preference for boys and sex
ratio
• Some support family
balancing, which is having a
second or third child of a
different sex than previous
child(ren)
ART WITH A THIRD PARTY
ART with a third party
• No national guidelines
determining and confirming
donor eligibility
• No national database to
keep track of donors,
offspring, and frozen
gametes and embryos
Gamete donation
• Sperm donation often kept secret
to preserve the infertile man’s
masculinity
• Egg donation increasing and more
open → gestational connection is
sometimes more important to
women than biological relationship
• “When a woman gets older, they get donor eggs, which
doesn’t make the baby any less beautiful or
perfect. One’s own eggs only last so long.” Marcia
Cross
Donation and anonymity
• Could lead to incest
• Importance of family history and
connection for identity
• US allows donor identity to remain
anonymous
• Many other countries allow children to find
out donor’s identity, or at least some
information, when they reach 18
Donor “designer” babies
Questions?