New article on prenatal screening online

 Yesterday I received word that the American Journal of Bioethics has accepted a so-called open peer commentary by myself on a coming so-called target-article that presents a seemingly drastic proposal regarding the ethics and policy of prenatal screening using non-invasive sample techniques and so-called whole genome sequencing technology for analysis. I am partly in sharp disagreement with this proposal, partly in full agreement, and rather critical of how the authors of the proposal have ignored crucial parts of the literature and linked complications. The response where I set out my reasons can now be accessed in its original form, before peer review or editing here and here.

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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
      
      
      
      

I and Other Philosophers/Bioethicists Criticise Richard Dawkins' Tweets and Statements on Abortion and Down Syndrome

So, I don't think anyone missed Richard Dawkins' recent ill-considered and inconsiderate tweet – in response to a personal, cautious reflection by a follower – that abortion of foetuses with Down Syndrome is morally obligatory, as well as the storm of outraged reactions to that and Dawkins' own retrospective apology and defence of his statements. Some reports are here, here, here and here. And Dawkins' own statement of apology and defence is here.

Now, in an article by Elizabeth Picciuto in The Daily Beast, a number of philosophers/bioethicists, among these myself, comment on Dawkins' statement from an intellectual point of view, as well as his attempt at formulating an intellectual and "logical" (a favourite adjective of Dr. Dawkins in his comments on the criticism) defence of it. Spoiler: it's not worth the paper it's written on and, in particular, it's peppered with logically invalid inferences.

On a personal note, I would like to add one thing to what's said in the article: Richard Dawkins' actions in this matter are especially peculiar in light of his former standing as Oxford professor of the public understanding of science. What he has done here is to promote widespread misunderstanding of bioethics, moral philosophy, as well as regarding the health science aspects of Down Syndrome and the rationale of liberal abortion legislation and prenatal diagnosis.

R.I.P. Adrienne Asch – Bioethicist, Philosopher and Disability Ethics Pioneer

Today, I'm reached by the sad news that Adrienne Asch – a pivotal figure in bioethics, particularly known for her important contributions to the understanding of disability-based perspectives on bioethics, not least  regarding prenatal and other sorts of such reproductive genetic testing this world doesn't seem to ever get enough of – passed away this morning after having suffered bad cancer for some time.

Confirmation of this last news is here, and the death notice has been traveling around Twitter and Facebook today, e.g., via my trusted Canadian colleague Udo Schuklenk, originating apparently from the account of the US National Federation of the Blind (where Adrienne was a prominent spokesperson):

Addendum 2013-11-20: the day after, Yeshiva University has now officially posted an in memoriam.

The NFB also provides a link to this recent address that Adrienne gave at their convention this summer. It tells the tale of her way into bioethics and philosophy from human rights activist work, explains why the disability perspective is so important to bioethics, and why bioethics is so important to the disability movement, and ends by some pretty hard to chew food for thought for bioethicists, disabled people as well as anyone. Information about her writings and other accomplishments can be sampled via her webpage at Yeshiva University, where she held three parallel chaired professorships and one directorship. But don't take my word on her qualities as a scholar for it, here's a video piece where you can watch her in action talking on her special topic and judge for yourself:

My own contact with Adrienne came via her work on the disability based criticism of prenatal (PNT) and eventually preimplantation genetic testing (PGD), which still holds up as the most eloquently put, stringently made and thought-through devised version of that important critique, which she nevertheless continued to develop (she had a couple of pieces in the American Journal of Bioethics last year). I had myself been barely sniffing some of what Adrienne herself had the full grip on in my work on PNT and PGD in the 1990's, but when I came to writing my first encyclopedia piece om PGD a few years later, I was lucky and awed to discover it all so much better told by Adrienne and since then, her work has been my main reference on that topic whenever I need to provide one. Many years later, as part of a European Commission sponsored project on access to higher education for disabled people and charged with arranging a workshop on relevant disability-related research, Adrienne's name was the first one to come to my mind as speaker – and to my astonishment and joy she said yes. This was not so long time back, so this is how I remember her, as in the picture above: working! Because that she did and contributed everything I could have ever wished for, including cracking a joke when it was best needed. There were plans made then that we never got around to finishing (or even initiating), but she nevertheless honoured me by referencing my PNT work, and we shared space in this book, which came about thanks to Daniela Cutas, who worked with me in this project and was introduced to Adrienne at that same workshop.

Also, used to getting around as a blind person in New York City, when we asked before she came to that workshop if she needed any special assistance, she declined, albeit finding out that this thing with the cobblestones and the trams of Gothenburg and all made it slightly less manageable than maybe she was used to or had expected. Did she intentionally show anything of that? Never! I sensed then the divide of experience between us that probably made an ocean of difference in our angle of approach into our respective work – as much as we reached conclusions of close proximity. The divide between one who in virtue of physiological constitution has always enjoyed the default upper societal hand and the one who has always encountered a basic tweaking the other way around. In any case, this is my own personal connection to and remembrance of Adrienne; hardworking, insightful, generous, profound, funny and proud.