The 13th International Conference on Clinical Ethics Consultation has just wrapped in Singapore. As with previous ICCECs, it was a great opportunity to hear from leading scholars around the world on the most pressing issues for clinical ethicists. Thanks again to speakers, delegates, sponsors and organisers whose support and hard work were essential to making the event a success!
(The Organising Committee members, from left to right: Asst Prof Voo Teck Chuan; Ms Veeramah Devi; Dr Owen Schaefer; Prof Alastair Campbell; Assoc Prof Anita Ho; Ms Sumytra Menon; Assoc Prof Jacqueline Chin)
Blood is thicker than water, or so the saying goes, reflecting the value we put on biological relationships. But is it something the law should recognise?
Singapore’s Supreme Court recently ruled on a case that asks this very question, and it gave a fascinating answer: parents have a strong interest in “genetic affinity” with their children, one that can merit compensation if subverted.
Genetic affinity is an entirely new legal standard. It has no clear precedent in any jurisdiction. But the court made a compelling argument that it has a sound basis in the way we value family and heredity.
Recognising that value will be particularly important as we advance into the genomic era, which will increase our ability to not only analyse but also alter our fundamental biological code.
ACB v Thomson Medical
The case in question involves an unfortunate mix-up. A couple underwent in-vitro fertilisation (IVF) at Thomson Medical Centre in Singapore. The process was successful, and the mother gave birth to a healthy baby girl (her second child via IVF) in 2010.
But the happy parents soon noticed that their daughter had markedly different features, including hair and skin tone, compared with them and their first child.
A genetic test found that the child was related only to the mother, not the mother’s husband. Thomson Medical confirmed a mistake had been made; an anonymous donor’s sperm, rather than the husband’s sperm, had accidentally been used to inseminate the mother’s egg.
The couple sued Thomson Medical, seeking damages including the child’s upkeep through to the age of 21. The case wound its way through the courts, eventually ending up before the Supreme Court, which issued a final ruling on March 2.
Upkeep and genetic affinity
The court denied the couple’s claim for upkeep costs because it would have a pernicious effect in that the child’s birth would be seen as an overall mistake, or loss to the parents.
The parents are raising the child, and an award would send a perverse and harmful message to the child that she was not valued, that her very existence required monetary compensation.
This reasoning has led many courts to deny “wrongful birth” upkeep claims. Such claims typically come up when someone parents a child after a botched voluntary sterilisation operation.
It was also the basis of Andrews v Keltz, a New York State Supreme Court “wrongful fertilisation” case involving a similar sperm mix-up.
Singapore’s Supreme Court was clearly dissatisfied with that outcome. It felt that the couple had suffered a very serious harm, one not captured by current common law.
So the court created a completely new category of loss – genetic affinity. It held that parents have a strong interest in being genetically related to their children, and that Thomson Medical had violated this interest.
Ironically, the court did set the award for loss of genetic affinity at 30% of upkeep costs to the couple in the end. This was not because upkeep itself was a loss to be compensated; it was because there seemed no other principled way to settle the financial value of genetic affinity.
Awarding a portion of upkeep was at least less arbitrary than an absolute award. At the same time, it may raise the concern that the value of genetic affinity has greater monetary weight for rich parents, who have higher upkeep costs, than poor parents.
The value of genetic affinity
More fundamentally, the case raises the question of whether there’s really a value in genetic affinity. The court relied, in part, on an obscure 1999 law review article by New York University law academic Fred Norton. In it, he argues that “parents have an interest in having children with whom they share symbolically identifying traits”.
But Norton’s argument is problematic because it is skin deep. He focuses on traits like appearance as grounding the interest in genetic affinity. This implies that the harm involved in the case was not about the misplaced sperm as such, but about certain superficial features of the misplaced sperm.
In ACB v Thomson Medical, the couple were of Chinese and German heritage, while the genetic father was of Indian heritage. If the genetic father had – by chance – also been of Chinese or German heritage (or both), would there have been a loss of genetic affinity?
Norton’s argument gives no reason for thinking so. Yet there’s something very disturbing about this. Is the value of a familial relationship reducible to a set of superficial appearances or traits?
A more sound moral basis for the value of genetic affinity would go much deeper. It would hold that genetic affinity isn’t just about appearances; it’s about consciously choosing to create a child by a mixing of this mother’s egg with this father’s sperm, producing a child with half the DNA of each parent.
Society and individuals place great value on such biological relationships. Genetic affinity – rather than appearance – grounds a parent’s obligation to pay child support, for instance. And men who suspect their spouses of cheating on them often care deeply about whether their children are really theirs.
The court supports this deeper value at various points in ACB v Thomson Medical, and it is quite compelling when it does so.
It’s careful to note, though, that genetic affinity is not an absolute value. Adoptive parenting relationships should be lauded, not devalued. But adoption’s value derives in part from its consensual nature.
When parents are denied genetic affinity with their child against their will, as in the present case, it is plausible that a great harm has indeed occurred.
It remains to be seen whether other jurisdictions will recognise the value of genetic affinity. But the judgment occurs at an interesting juncture in human history. We are gaining unprecedented ability to tinker with our genetic code, and this raises interesting ethical issues.
Do women with mitochondrial disorders have a right to engage in “three-parent IVF” to ensure genetic affinity with a healthy child, for instance?
If we use CRISPR-cas9 gene-editing technology to alter the genes of embryos, does it constitute a loss of genetic affinity with parents? And is it possible to use such editing to shift genetic affinity, by making a child’s traits more in line with one parent rather than the other?
These questions will only become more pressing as science advances, and the concept of genetic affinity may provide a coherent lens through which to consider them.
While Singapore will see a new regulatory regime for research as the Human Biomedical Research Act (HBRA) comes into force, the US has undergone one of the most major revisions to its own ‘Common Rule’ regulating research in decades. Interestingly, the new Common Rule overall relaxes restrictions on various aspects of research in the US. In this post I’ll briefly summarise some of the big takeaways, and draw some comparisons to the HBRA.
Registration is now open for the International Conference on Clinical Ethics Consultation 2017! We also have opened bursary applications for two categories: Singaporean allied health professionals, and health professionals from low- or middle-income countries. The abstract-based bursary award category is now closed, as the call for abstracts has ended.
We are still reviewing abstracts, and will make announcements on acceptances as well as abstract bursary awards in late January.
In advance of our January 12-13 conference on research ethics, the Centre for Biomedical Ethics at NUS will be hosting a stakeholder consultation workshop on the Ministry of Health’s (MOH) draft policy on incidental findings in research. Participants will:
learn about the content of this draft policy;
hear local & international experts’ perspectives; and
explore specific aspects in facilitator-led breakout groups.
Representatives from MOH will be present to provide clarifications on the policy as needed. Feedback generated by participants will be systematically collated and provided to MOH after the event. Lunch and refreshments will be provided. Registration is free and open but spaces are limited. We have reserved 15 spaces especially for clinician scientists (registered medical practitioners who also engage in research). These individuals should register at theclinician scientist registration page. Others should register at thegeneral registration page. Once the 15 slots reserved for clinician scientists are filled, subsequent clinician scientist registrants should use the general registration page if not yet full.
The Ministry of Health has stated that the first substantive portion of the Human Biomedical Research Act (HBRA) will be brought into force on January 1, 2017: the ban on commercial trading of human tissue. While occurring within the HBRA, this ban applies to all tissue, including that acquired for therapeutic purposes. You can view the official notification on the MOH website, and contact firstname.lastname@example.org for questions.
There are two important clarifications within the law, as stated in the announcement:
Substantially manipulated tissue (including stem cell lines) are exempt. Further clarification of substantially manipulated tissue is laid out in the First Schedule of the HBRA.
The HBRA allows reimbursement for “reasonable costs and expenses” in the collection, preservation, assessment and transportation of the tissue. To avoid doubt, when tissue is paid for in this manner, purchasers should obtain an itemised price breakdown that shows how the price was derived from such reasonable costs and expenses.
At this time, there are no anticipated regulations concerning tissue sales that will be released before the provisions come into force. If this changes, we will send out a further note of clarification. (Notably, this does not supersede existing prohibitions on commercial organ trading for transplant purposes, which are delineated in the Human Organ Transplant Act.)
Given how soon the ban comes into force, it is advisable that clinicians and researchers who use human tissue from third parties make arrangements to comply with the HBRA. Anyone buying and selling of human tissue without qualifying for one of the law’s exemptions may be liable for a prison sentence of up to 10 years and a fine of $100,000.
We’re excited to share that the Centre for Biomedical Ethics is currently looking for two motivated, well-qualified Research Fellows or Research Associates! Details are as follows:
1) Research Fellow
The Research Fellow will be working at the NUS Centre for Biomedical Ethics on the CENTRES (Clinical Ethics Network+ Research Ethics Support) project. Funded by the Ministry of Health, CENTRES is a networking and training platform to enhance capabilities in ethics committees work in Singapore. The position lasts for one year, with the possibility of renewal for another year if performance is satisfactory. Applications are due November 16, 2016.
The Research Fellow/Associate will work on a cutting edge empirical bioethics at the National University of Singapore’s Centre for Biomedical Ethics. The position is part of the Integrating Ethics Policy in Precision Genomics project, funded by a Humanities and Social Sciences seed grant as well as the Centre for Precision and Population Health (NUS). The position will begin between January and March 2017, ending 31 March 2017, with the possibility of extension if future grant applications are successful. Applications will be considered on a rolling basis.
Please use the links above for information about qualifications, how to apply and whom to contact with queries. If you would like to be considered for both positions, you may make a single application and make a note of your interest in the other position in your covering letter.