Mednotes

L6 Ethics Assisted reproduction

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tagsethics, lecture
aliasesL6 Ethics Assisted reproduction

16 min read

Overview

This lecture traces the history of reproductive ethics (contraception, sterilisation, abortion), then builds the four key ethical concepts used to analyse assisted reproduction (Reproductive Autonomy, Procreative Liberty and Reproductive Justice), before applying them to New Zealand’s legal framework for assisted reproductive technology (the Human Rights Act 1993 and the HART Act), public funding pathways, and the Act’s three-tier system of established, regulated and prohibited procedures. It closes with emerging technologies (PGD, CRISPR, commercial genetic screening) and the ethical debates they raise.

Historical context of reproductive ethics

This history has shaped laws, policies and attitudes about all kinds of reproductive healthcare.

  • Contraception and the right not to reproduce: illustrated by Margaret Sanger’s pamphlet “The Fight for Birth Control” and family planning material promoting “healthier mothers, sturdier babies, happier homes”.
  • Sterilisation and the right to reproduce: in 1928 the New Zealand parliament debated a law that would give a committee of government employees and doctors the power to authorise sterilisation of people declared “feeble minded”, “unfit”, “degenerates”, “imbecile children” and with “mental defects”. The proposal had broad support among NZ politicians, medics, the judiciary, several women’s organisations and academics; per historian Hamish Spencer, this support would have been sufficient to gain parliamentary approval had the government pushed the issue slightly harder. The sterilisation provisions did not pass.
  • Abortion and the right to end a pregnancy: illustrated by a 1974 police raid that closed an Auckland abortion clinic, and by the ongoing contrast between pro-choice and pro-life protest movements.

Two collages in this section (historical images of a monarchic family tree, a Māori woman in a formal seated setting, a multi-generational family, and a parent holding a newborn's hand; and separate historical engravings appearing to show a woman being auctioned, a woman being forcibly seized, and a bride-selection-type ceremony) carry no captions, titles or sources on the slides. Their intended connection to the lecture's argument is not stated and is not inferred here.

Reproductive autonomy, procreative liberty and reproductive justice

Reproductive Autonomy is the power to decide and control contraceptive use, pregnancy, childbearing, and sterilisation. A person with reproductive autonomy can control:

  • Whether and when to become pregnant.
  • Whether and when to use contraception, and which method to use.
  • Whether and when to continue a pregnancy.
  • Whether and when to be sterilised.

Reproductive autonomy challenges medical power, economic and other restrictions, and social norms.

Procreative Liberty is the concept applied to assisted reproduction specifically, prompted by the birth of Louise Brown (the world’s first “test-tube baby”, via IVF) and articulated in John A. Robertson’s “Children of Choice: Freedom and the New Reproductive Technologies”. IVF itself proceeds through five steps: stimulation, egg retrieval, fertilisation, embryo culture, embryo transfer.

Reproductive Justice is the idea that access to reproductive care is unevenly distributed. Justice Ruth Bader Ginsburg (1984) noted the irony that women who are not poor achieved access to abortion with relative ease, while for poor women (a group in which minorities are disproportionately represented) access to abortion was not markedly different from the pre-Roe era. Professor Loretta Ross (2006) defined reproductive justice as: the right to have a child, the right not to have a child, the right to control our birthing options, the right to parent the children we have, and the necessary enabling conditions to realise these rights.

These concepts developed historically in five stages:

  1. Right Not to Reproduce - challenging bans on contraception and abortion.
  2. Right to Reproduce - challenging the practice of forced sterilisation.
  3. Reproductive Autonomy - individuals should have the right to make their own decisions about whether to get pregnant, whether to stay pregnant, and whether to be sterilised, plus other medical decisions around birth and fertility.
  4. Procreative Liberty - challenging legal and practice barriers to assisted reproductive technologies (ART), e.g. barriers based on sexual orientation, marital status, age, or the nature of the technology.
  5. Reproductive Justice - arguing for the right to have children, the right not to have children, the right to parent existing children, and the right to the enabling conditions to realise these rights; centring people marginalised by existing frameworks.

Under the Human Rights Act 1993, it is unlawful to discriminate against someone in the provision of goods and services on the grounds of: sex, marital status, religious belief, ethical belief, colour, race, ethnic or national origins, disability, age, political opinion, employment status, family status, or sexual orientation.

The Human Assisted Reproductive Technology Act 2004 (HART Act) has six purposes:
(a) to secure the benefits of assisted reproductive procedures, established procedures, and human reproductive research for individuals and society by protecting and promoting the health, safety, dignity and rights of all individuals, particularly women and children;
(b) to prohibit unacceptable assisted reproductive procedures and unacceptable human reproductive research;
(c) to prohibit certain commercial transactions relating to human reproduction;
(d) to provide a robust and flexible framework for regulating and guiding assisted reproductive procedures and human reproductive research;
(e) to prohibit assisted reproductive procedures (other than established procedures) or human reproductive research without the continuing approval of the ethics committee;
(f) to establish a comprehensive information-keeping regime so people born from donated embryos or donated cells can find out about their genetic origins.

Purposes (b), (c), and the information-keeping element of (f) are emphasised in the lecture as the Act’s core prohibitions and safeguards.

Infertility in New Zealand and public funding

Between ages 33-44, 14% of men and 19% of women in NZ have experienced infertility, similarly across European, Māori and Asian ethnicities; medical help was sought by almost 70% of infertile people, significantly less often among Māori and Pacific peoples. (The cited survey article reports comparable overall findings: 8.2% of men and 12.5% of women reporting infertility, prevalence peaking in the 35-44 age group, higher relative risk for Pacific men and women, and medical help sought by 69.3% of infertile men and 68.2% of infertile women, again lower for Māori and Pacific.)

Publicly funded treatment pathway:

  • After 12+ months trying to conceive, a GP can refer the patient for a First Specialist Assessment (FSA) with a fertility specialist, as for any other identified medical condition.
  • There are two funding stages: the publicly funded consultation (FSA) and publicly funded treatment itself.
  • At the FSA, the patient is scored out of 100 using the fertility Clinical Priority Assessment Criteria (CPAC); a score of 65 or higher qualifies for funded treatment.
  • A private consultation can also be used to access the public treatment pathway, useful for those wanting assessment sooner than the public wait of 3-4 months.
  • Once qualified, the patient joins the waitlist for public treatment.

GP referral eligibility criteria for an FSA:

  • The woman must be 39 years or younger at the time of referral.
  • NZ residency or a work permit held for at least two years, applying to both members of a couple, not just the woman; proof of residency, citizenship or work visa must be provided before eligibility is confirmed.
  • One year of infertility or a known severe cause, or an indication for fertility preservation (e.g. prior to cancer treatment).
  • BMI criteria differ by region: in Auckland/Northland the woman’s BMI must be under 35 at the FSA consult but under 32 to start treatment, and the man’s BMI under 40; elsewhere in NZ the woman’s BMI must be under 32, with no BMI requirement for the man at either stage.
  • The referral must include information on both the patient and their partner, if applicable.

HART Act: established, regulated and prohibited activities

The Act sorts assisted reproductive procedures into three tiers.

Established procedures - clinics can offer these and must follow standard procedures: artificial insemination, assisted hatching, blastocyst culture, collection of eggs for donation, collection of sperm for donation, cryopreservation of ovarian tissue/gametes/embryos, gamete intrafallopian transfer (GIFT), intracytoplasmic sperm injection (ICSI), in vitro fertilisation (IVF).

The established-procedures list on slide 26 is partially obscured by an overlaid chart; the full wording above is taken from the equivalent, legible list on slide 27's pdftotext extraction.

Regulated activities - the clinic and patients must receive approval from NZ’s specialist ART ethics committee: surrogacy arrangements involving fertility services, donation of eggs or sperm between certain family members, embryo donation for reproductive purposes, PGD for HLA tissue typing, research on gametes and non-viable embryos, and use, storage and disposal of sperm from a deceased man.

Prohibited activities - not permitted in NZ: reproductive cloning; implanting a genetically-modified human gamete or embryo into a human; implanting a nonhuman animal gamete, embryo or hybrid embryo into a human (and vice versa); PGD or other procedures for non-medical sex selection; commercial gamete or embryo procurement; commercial surrogacy.

Family gamete donation and surrogacy

Before approving family gamete donation, embryo donation for reproductive purposes, or clinic-assisted surrogacy, the national ethics of ART committee (ACART) must be satisfied that:

  • All relevant parties consent, with no undue influence.
  • Full genetic siblings are produced in no more than two families.
  • The procedure is the best or only opportunity for the intending parents to have a child.
  • The intending parents are not using the procedure for social or financial convenience or gain.
  • The genetic, social, cultural and intergenerational aspects of the arrangement safeguard the wellbeing of all parties, especially any resulting children.
  • The relationships between the parties safeguard the wellbeing of all parties, especially any resulting children.

No approval is given for gamete donation where the child’s genetic parents would be genetically-related close relatives, specifically: father and daughter, mother and son, brother and sister, grandfather and granddaughter, grandmother and grandson, half-brother and half-sister, uncle and niece, aunt and nephew, uncle and half-niece, or aunt and half-nephew.

Two case scenarios illustrate this rule. In the first, David (infertile) and Lucy consider sperm donors from among David’s brother, David’s father, Lucy’s brother, and Lucy’s first cousin; if the eggs are Lucy’s, a donation from Lucy’s brother would create genetically-related close-relative parents (brother and sister) and could not be approved, whereas David’s brother, David’s father and Lucy’s first cousin are not on the barred list. In the second, Sue (infertile, menopausal at 47, now with new husband Steve) considers her 23-year-old daughter Lucy, who works for Steve, as an egg donor, with Sue carrying a baby made from Lucy and Steve’s gametes; no genetic relationship between Lucy and Steve is stated in the lecture, so this pairing is not barred by the close-relative list, though the scenario is used to prompt discussion of other potential ethical issues and safeguards.

Surrogacy specifically: surrogacy arrangements involving fertility services are a regulated activity (ethics committee approval required); commercial surrogacy is prohibited. Commercial surrogacy means the surrogate is compensated beyond reimbursement of expenses; altruistic surrogacy means the surrogate is reimbursed only reasonable expenses.

The 2013 Thailand surrogacy case: an Australian couple used a Thai surrogate who became pregnant with twins. The male twin was prenatally diagnosed with Down syndrome; the surrogate declined selective termination. The intended parents took the female twin back to Australia and left the male twin, whom the surrogate then cared for. The intended father had prior convictions for child abuse, and the surrogate claimed the eggs came from a Thai donor. This case, along with several other difficult surrogacy cases in 2014-2016, led Thailand to ban commercial surrogacy.

NZ’s own surrogacy law has been under review, referenced via the “Improving Arrangements for Surrogacy Bill”, reported from the Health Committee, which recommended the bill be passed with all amendments agreed unanimously.

Emerging and future reproductive technologies

Pre-Implantation Genetic Diagnosis (PGD) proceeds in three steps: embryo biopsy (a cell/blastomere is drawn out of the embryo), tubing (the sample is transferred via tube into a vial), and discarding abnormal embryos (embryos are assessed and abnormal ones discarded while others are kept).

Genome editing (CRISPR/Cas9) is shown schematically: a guide RNA directs the Cas9 protein to a matching genomic sequence next to a PAM sequence, Cas9 cuts the DNA, and the cut is repaired using donor DNA, producing targeted genome editing; the lecture illustrates this applied across human cells, zebrafish, and bacterial cells.

Commercial genetic-testing companies were shown as examples of where these technologies are heading: BabyGenes offers newborn genetic testing; Orchid offers embryo screening for a long list of conditions including neurodevelopmental delay, coeliac disease, breast cancer, prostate cancer, heart defects, intellectual disability, colorectal cancer, bladder cancer, epilepsy, type 1 diabetes, osteoporosis, autism spectrum disorder, melanoma and thyroid conditions; illumiscreen offers non-invasive prenatal screening (NIPS) from as early as 10 weeks, described as the only such screening performed in Aotearoa New Zealand.

Self-test

  1. Define reproductive autonomy and list the four decisions a person with reproductive autonomy can control.
  2. Distinguish procreative liberty from reproductive autonomy.
  3. According to Loretta Ross (2006), what four rights make up reproductive justice, and what additional condition does she add?
  4. Describe, in order, the five historical stages in the evolution of reproductive ethics and patient rights.
  5. What did the 1928 NZ sterilisation bill propose, who would have made the decisions, and what was its outcome?
  6. List the HART Act 2004’s six stated purposes.
  7. Distinguish established, regulated and prohibited activities under the HART Act 2004, giving one example of each.
  8. What must NZ’s national ethics of ART committee be satisfied of before approving family gamete donation, embryo donation, or clinic-assisted surrogacy?
  9. State the rule governing which family relationships cannot be approved for gamete donation, and give two examples.
  10. Distinguish commercial surrogacy from altruistic surrogacy under NZ law.
  11. Describe the key events of the 2013 Thailand surrogacy case discussed in the lecture, and what followed from it in 2014-2016.
  12. What eligibility criteria must a GP apply before referring a patient for a First Specialist Assessment for public fertility funding?
  13. Describe the CPAC pathway to publicly funded fertility treatment, including the qualifying score.
  14. What are the three steps of Pre-Implantation Genetic Diagnosis (PGD) shown in the lecture?
  15. Using the two case scenarios in the lecture (David and Lucy’s potential sperm donors; Sue, Steve and Lucy), identify which potential donor is barred by the close-relative rule and explain why the other pairing is not covered by that rule.

Answers

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