Special issue of Bioethics: Ethical Implications of New and Future Technical Developments in Prenatal Testing and Screening

One of  my core research fields over the years has been reproductive ethics, especially the ethics of genetic and reproductive technology. In my postdoc period, I published a study on the moral roots of prenatal diagnosis, followed by a number of further explorations of the ethics of reproductive technology, genetic testing and medical screening programmes in general. The last two years, this process has come full circle, due to new revolutionary technical developments regarding prenatal testing and related genetic analysis, and the last year or two, I have been busy presenting and discussing issues related to this several times with Swedish medical professional and medical ethical organisations and actors. In the spring of 2013, I was invited to present my views on this topic at a specially convened international symposium at the Brocher Foundation in Geneva, Switzerland. Out of that event now comes a full special issue on the ethical implications of new and future technical developments in prenatal testing and screening of the journal Bioethics, edited by Wybo Dondorp and Jan van Lith, of Maastricht and Leiden universities, respectively:

The content, of course, features a developed version of my talk at the Brocher meeting – A New Ethical Landscape of Prenatal Testing: Individualizing Choice to Serve Autonomy and Promote Public Health: A Radical Proposal – arguing that the technical advances of prenatal testing should herald the beginning of the end of of large societal prenatal screening programmes. But the issue also features a large number of other contributions from leading names in the field, e.g. Angus Clarke, Zuzana Deans, Ainsley Newson, Steve Wilkinson and Guido deWert, and the full table of content reads as follows:

EDITORIAL

1. Dynamics of Prenatal Screening: New Developments Challenging the Ethical Framework (pages ii–iv)Wybo Dondorp and Jan van Lith

PAPERS

1. 1. Prenatal Screening: Current Practice, New Developments, Ethical Challenges (pages 1–8)Antina de Jong, Idit Maya and Jan M.M. van Lith
      
      
   2. Psychological Aspects of Individualized Choice and Reproductive Autonomy in Prenatal Screening (pages 9–18)Jenny Hewison
   3. For Your Interest? The Ethical Acceptability of Using Non-Invasive Prenatal Testing to Test ‘Purely for Information’ (pages 19–25)Zuzana Deans, Angus J. Clarke and Ainsley J. Newson
   4. Prenatal Screening, Reproductive Choice, and Public Health (pages 26–35)Stephen Wilkinson
   5. A New Ethical Landscape of Prenatal Testing: Individualizing Choice to Serve Autonomy and Promote Public Health: A Radical Proposal (pages 36–45)Christian Munthe
   6. Prenatal Screening: An Ethical Agenda for the Near Future (pages 46–55)Antina de Jong and Guido M.W.R. de Wert
      
      
      
      

Could Reproductive Liberty be Ethically Curtailed for Environmental Policy Reasons? or Why I Would Have Rejected Cristina Richie's Article on IVF

It's been a bit of a gale (as opposed to a bona fide storm) lately, following an article in the Journal of Medical Ethics by Cristina Richie, entitled "What would an environmentally sustainable reproductive technology industry look like?". It's not the question of a full hurricane, as in the infamous "after birth abortion" paper from 2012, but this rather raving rant is on the more aggressive end of the scale of reactions to Richie's piece. I dislike the language and the attitude expressed at the end of this article for simple reasons of decency and respect, but I also rather dislike Richie's article for more intellectual reasons. In fact, having read it, I have come to the conclusion that, had I been the JME reviewer for it, I would have recommended rejection.

Based on the undisputed fact that human reproduction carries with it a carbon footprint (assuming fixed per capita consumption levels related to population-size and -growth), Richie's paper argues about assisted reproductive technologies (ART), such as IVF, that...

The use of ART to produce more human-consumers in a time of climate change needs to be addressed.  Policymakers should ask carbon-emitting countries to change their habits to align with conservation. And though all areas of life – from transportation, to food, to planned technological obsolescence – must be analysed for ecological impact, the offerings of the medical industry, especially reproductive technologies, must be considered as well.

More specifically, she argues that access to ART should be restricted to "those who are not biologically infertile", meaning thereby to exclude, e.g., homosexual couples, single individuals and other "rainbow" family constellations. In particular, she claims, such restriction should befall publicly funded medical services of this kind. To season the stew somewhat, Richie is openly declared as belonging to "catholic theorlogical ethics", attached to an openly Catholic academic institution, the theology department of Boston College, a church well-known for its officially set hostile stance towards both ART in general and, in particular, technological facilitation of human reproduction in other social forms than within that of a married heterosexual couple.

Iain Brassington at the JME's blog has opposed the idea that Richie therefore should have declared a conflict of interest. He does however concur with several critics, some described here, that the attempted distinction between "biological" and other types of infertility is swampy territory. In fact, all infertility is always partly social, as it depends on a person or a group of persons being unsatisfied by existing alternatives to using ART, such as keep on trying the old "natural" way, attempt to adopt, or remain childless. A particularly tricky thing is that many times, individuals belonging to the group that Richie would presumably call "biologically" infertile, their infertility may very well be due to the fact that they prefer to keep to their couple relationship. Already here, had I been a reviewer of the paper, I would have unconditionally demanded revision. This is sloppy conceptual work of a sort a philosophy teacher slams A-level students for and it is given the job of providing substance to one of the article's main theses. I'm frankly surprised that reviewers and editors of a leading bioethics journal could let that one pass.

At the same time, Brassington insists in another comment that the general idea, which is the other thesis of the article, of subjecting human reproductive liberty and policies to the challenge of their impact on pressing environmental problems is not necessarily ill-conceived. Again, I agree, as I should do, having argued some 18 years back (an open access preprint is here) that global justice and health concerns may be reasons for people to avoid having children and rather adopt or otherwise assist existing children in need. As I argued in that context, however, Brassington observes that there seems to be no reason to restrict the environmental argument to the use of ART, but rather that if the argument bites, it points towards more general conclusions about the value of avoiding human procreation, e.g. via adoption or policies like the infamous Chinese 1-child restriction or other types of limitations.

Another comment that expands this particular line of criticism has emerged from Dominic Wilkinson, also on the JME blog, where he argues that Richie's argument is flawed to the core, due to its claim that ARTs are in some way extra environmentally problematic. Now, Richie herself does openly confess that this may very well not be so, but that she nevertheless chooses to restrict her paper to a thesis pertaining to ART. In other words, the main thesis of the article is entirely dependent on an ad hoc and arbitrary restriction of its thematic scope. Richie presents no argument justifying this restriction, but her article nevertheless is left to pursue a main claim pertaining to ART and only ART. This, given the level of ethical controversy around ARTs, is unjustified bias. Had Richie presented an argument in favour of the limitation of the scope it hadn't been so, but since she in fact claim herself that there's nothing special with ARTs, the article is clearly skewed in an unwarranted way. Therefore, had I been reviewer, I would have faulted the article on that ground, demanding a more general discussion of reproductive liberty in the face of environmental policy – alternatively, independent arguments for singling out ARTs as a specific target. This is a major flaw that the review or editorial process should have caught.

Together these two problems with the article point to a third one, namely that it aims to prove two intellectually independent main claims. This is asking for trouble, as everyone knows, but it is obvious why Richie wants to take the risk: without the combination, she wouldn't have been able to aim her shot specifically at the application of ART for the facilitation of reproduction within "alternative" families. Thus, Richie has an apparent (possibly religiously motivated) agenda to place a questioning of ART and specific applications of ART in a well-regarded scientific journal. Even if that doesn't amount to a conflict of interest, it undercuts the claim to intellectual honesty one would require of a researcher worthy of publication in the JME. Again, I'm surprised that this wasn't picked up in the JME review or editorial process.

Having said that, the general ethical issues arising out of the link between human reproduction and environmental concerns (of all kinds), are sure worthy of more reflection. In fact, this is something that I will be addressing with qualified colleagues at a panel convened by myself on Reproductive Public Health Ethics at the MANCEPT Workshops in Political Theory in just a few weeks.

Reproductive Public Health Ethics at MANCEPT 2014

Happy to be able to tell the world that a proposal headed by myself for a series of sessions at the increasingly popular and important MANCEPT Workshops in Political Theory conference has been accepted for this year's edition, September 8-10, 2014.

The proposal is on the theme of Reproductive Public Health Ethics, where a selected lineup of speakers from the Netherlands, Romania, Sweden and the UK will address different dimensions (biopolitics, bioethics, public health ethics, population ethics, environmental ethics) of ethics and value issues attached to reproductive policy. The presenters include, besides my humble self:

Gustaf Arrhenius
Richard Ashcroft
Becky Brown
Krister Bykvist
Daniela Cutas
Angus Dawson
Anca Gheaus
Kalle Grill
Marcel Verweij
Stephen Wilkinson

With a few possible additions to come. More on this as the exact program etc. is set and made public.

New book chapter available open access: The Best Interest of Children and the Basis of Family Policy: The issue of reproductive caring units

As some of you may recall, a little while ago, I flagged a forthcoming book called Families: Beyond the Nuclear Ideal (edited by daniela Cutas and Sarah Chan and published by Bloomsbury Academic in its Science, Ethics and Society series), where I have a chapter, together with my colleague Thomas Hartvigsson. What I was perhaps not entirely clear about is that, in fact, this chapter and – indeed! – the rest of the book is avaliable open access for reading and non-commercial sharing under a Creative Commons lisence, while the book can also be purchased as both hardcopy and e-book in the regular fashion. To me, a rather clever solution for trying to combine the commercial requirements of running a publishing business and still satisfy the very sound and strong arguments for having all sort of research material and academic output freely available for anyone.

Our chapter is called "The Best Interest of Children and the Basis of Family Policy: The issue of reproductive caring units" and deals with an issue that we introduce, thus:

The notion of the best interest of children figures prominently in family and reproductive policy discussions and there is a considerable body of empirical research attempting to connect the interests of children to how families and society interact. Most of this research regards the effects of societal responses to perceived problems in families, thus underlying policy on interventions such as adoption, foster care and temporary assumption of custodianship, but also support structures that help families cope with various challenges. However, reference to the best interest of children can also be applied to a more basic issue in family policy, namely that of what is to be considered a family in the first place. This issue does not raise any questions regarding the proper conditions for when society should intervene in or change the family context of a child. Rather, it is about what social configurations should be recognized as a potentially fitting context for children to enter into and (if all goes well) eventually develop into adulthood within. Any social configuration so recognized constitutes what we will call a reproductive caring unit (RCU). An RCU is a social configuration such that society's default institutional arrangements allow it to have (by sexual and artificial reproduction, adoption, and combinations of these), care for and/or guard children – the approved RCUs thereby being the basic ‘menu’ of what families with children there may be in society. Opinions on what should be allowed to be an RCU will frame any further discussion of the questions already mentioned, but also policies having further implications for, for example, the practices of adoption and reproductive technology, as well as regulation of custody in the event of separation or parental disagreement.

There is a communicative problem involved in talking about this issue in terms of the word ‘family’, however. Due to a combination of biological necessities, socio-economic and developmental circumstances, prejudice and custom, people around the world tend to associate this term with the presence of romantic or sexual relationships (between adults) and/or genetic links (between adults and children). However, the question indicated above does not necessarily imply such things to be in place in the case of a legitimate RCU. What should be awarded the standing of a family in this sense, then, may be something that many people find strange to call a family. At the same time, if you ask the question whether a single mother and her adopted child, or four adult siblings living together and caring for a foster child could constitute fitting social arrangements for children to enter and develop within, people would not (we presume) rule out this question as empty just because the word ‘family’ seems odd to apply to them. Rather, we suggest, social configurations within which children are raised are called ‘families’ as we tend to view them as legitimate RCUs. Thus, to the extent that there are reasons to allow RCUs not involving the ingredients of romantic/sexual relations or genetic linkage, this will be a reason to change linguistic practice.

The question we want to address, then, is about what is implied by arguments in terms of the best interest of children for the issue of what should be allowed to be a family in the sense of an RCU. This is a question not about particular cases, but about general institutional arrangements. Society needs policies as to what RCUs to allow and within these frames, any single initially legitimate RCU may be found unfitting for serving this purpose, just as in the case with dysfunctional ‘nuclear families’. Arguments about what is in the best interest of the concerned children in such cases can (and should) be brought to bear on this issue. However, as will be seen, these arguments involve quite different considerations compared to when assessments in terms of the best interest of children are applied to the issue of RCUs.

If you feel tempted by this, please just click on the chapter link, and read it in its entirety, as well as the other contributions to this book, by authors such as Adrienne Asch, David Gurnham, Paul D. Hastings, Kerry Lynn Macintosh, Julie McCandless, Melinda Roberts, Joanna E. Scheib, Mary Lyndon Shanley, Naura Irene Strassberg, and several others.

And if you like that, please consider buying the book, or at least liking its Facebook page, or in other ways contributing to spreading awareness of its availability. Thank you!

Families – Beyond the Nuclear Ideal...

...is the title of a book soon to be released by Bloomsbury Academic as part of its Science, Ethics and Innovation series, edited by Daniela Cutas and Sarah Chan, with one chapter contributed by myself and Thomas Hartvigsson (on how to apply the best interest of children standard to the issue of what sort of families to allow), plus others by, e.g., Adrienne Asch, Melinda Roberts, Kerry Lynn Macintosh and a number of other distinguished scholars in whose company I'm very proud to be.

 

In the words of the presentation by the editors, this book....

...examines, through a multidisciplinary lens, the possibilities offered by relationships and family forms that challenge the nuclear family ideal, and some of the arguments that recommend or disqualify these as legitimate units in our societies.

That children should be conceived naturally, born to and raised by their two young, heterosexual, married to each other, genetic parents; that this relationship between parents is also the ideal relationship between romantic or sexual partners; and that romance and sexual intimacy ought to be at the core of our closest personal relationships -- all these elements converge towards the ideal of the nuclear family.

The authors consider a range of relationship and family structures that depart from this ideal: polyamory and polygamy, single and polyparenting, parenting by gay and lesbian couples, as well as families created through current and prospective modes of assisted human reproduction such as surrogate motherhood, donor insemination, and reproductive cloning.

And the full table of contents runs like this:

Chapter 1: Daniela Cutas and Sarah Chan, Introduction: Perspectives on Private and Family Life
Chapter 2: Julie McCandless, The Role of Sexual Partnership in UK Family Law: the Case of Legal Parenthood

Chapter 3: Mianna Lotz, The Two-Parent Limitation in ART Parentage Law: Old Fashioned Law for New-Fashioned Families
Chapter 4: Christian Munthe and Thomas Hartvigsson, The Best Interest of Children and the Basis of Family Policy: The Issue of Reproductive Caring Units
Chapter 5: Joanna Scheib and Paul Hastings, Donor-conceived Children Raised by Lesbian Couples: Socialization and Development in a New Form of Planned Family
Chapter 6: David Gurnham, Donor-conception as a ‘Dangerous Supplement’ to the Nuclear Family: What can we learn from parents’ stories?
Chapter 7: Susanna Graham, Choosing Single Motherhood? Single Women Negotiating the Nuclear Family Ideal
Chapter 8: Mary Shanley and Sujatha Jesudason, Surrogacy: Reinscribing or Pluralizing Understandings of Family?
Chapter 9: Adrienne Asch, Licensing Parents: Regulating Assisted Reproduction
Chapter 10: Simon Căbulea May, Liberal Feminism and the Ethics of Polygamy
Chapter 11: Maura Irene Strassberg, Distinguishing Polygamy and Polyamory Under the Criminal Law
Chapter 12: Dossie Easton, Sex and Relationships: reflections on living outside the box  

Chapter 13: Kerry Lynn Macintosh, Human Cloning and the Family in the New Millenium  

Chapter 14: Melinda Roberts, Moral and Legal Constraints on Human Reproductive Cloning

 

You can follow the book on its Facebook page to receive notification of publication, ordering opportunities, and so on.