Designer Babies - three documentaries « BioethicsBytes

Designer Babies - three documentaries

The term ‘designer babies’ is one frequently used in the media, though scientists find it ‘slippery’; geneticist Steve Jones says “the phrase ‘designer babies’ just fills me with despair; it promises so much, but delivers nothing”. Instead, scientists such as Jones would generally prefer to consider individually the variety of technologies that are embraced by the term, notably pre-implantation genetic diagnosis (PGD), gene therapy and genetic enhancement. Other entries on the BioethicsBytes site have reviewed resources about these developments (see, for example, the post on the A Child Against All Odds series and Bioethics Bytes Guide to Streamed Media for discussion of PGD, and Horizon: Trial and Error on gene therapy).



Having said that, this entry is headed Designer Babies because the phrase has been used directly in the title of a number of documentaries, including the three programmes discussed here. These are: Life and Death in the 21st Century: Designer Babies (Horizon); Who’s Afraid of Designer Babies? (also Horizon); and Designer Babies (National Geographic). Each episode will be considered in turn, and some comparisons and recommendations are drawn together at the end.



Life and Death in the 21st Century: Designer Babies
The BBC Horizon series marked the millennium with a series of three programmes examining the potential impact of science on human life in the near future. The final episode, Designer Babies (6th January 2000; TRILT identifier: TVI16522) had actually been broadcast previously under the title Babies of the millennium: designer babies (7th April 1999; TRILT identifier: TVI4440). A transcript of the programme can be found on the BBC website.



We will only discuss this episode briefly, since the 2005 Horizon Whose Afraid of Designer Babies? is, to a large extent, an updated version. This programme considers many ethical issues, focused around two core questions: Can scientists create designer babies and, if they can, should they do so? The episode opens with a number of prominent scientists and ethicists giving their views, and this could serve as a handy scene-setter for a classroom discussion. Indeed, the main value of this particular programme is the barrage of quotable quotes (the transcript, linked above, is very helpful in this regard). Not least Princeton Geneticist Lee Silver’s closing comment “In a society based on market principles I don’t think there’s any way to stop the use of this technlogy by those who have money”.



Initially, the episode focusses on the Abshire family. Maigon Abshire, the first daughter of Renee and David Abshire, died aged three from TaySachs, a disease of the central nervous system. Desperate to avoid their next child having the same fate, the Abshires were the first in the USA to use pre-implantation genetic diagnosis (PGD).



Later, there is discussion about the production of Dolly the Sheep, and more particularly Polly, who was the first evidence that the cloning process can be tweaked to include the addition of new genetic information into an embryo and, hence, into all the cells of the resultant organism. In the case of Polly, the human gene for Factor 9, a protein involved in blood clotting, was introduced into an egg at the start of the cloning process. The resultant sheep produced large amounts of Factor 9 in her milk.



Finally, there is discussion of how much of our adult form, both our physique and our character, is down to our genes (a rehearsal of the nature v nurture debate), and consideration of the expense of the processes, with the concern that the benefits of the technology will only be available to the rich.



Who’s afraid of Designer Babies?

In many ways, Who’s Afraid of Designer Babies? (48 minutes; 24th February 2005; TRILT identifier: 00513446) is a conscious updating of the earlier Horizon episode and manages to bring both the science and the ethics into rather sharper focus. The programme helpfully disentangles the various technologies that are often lumped together in discussions about designer babies and deals in turn with PGD, gene therapy and cloning. Depending upon available time, this three-section structure may make the episode particularly useful for teaching; each section might form the basis of three linked lessons. Both a summary of the programme and a full transcript are available from the BBC website.



Who’s Afraid… begins with consideration of PGD. We are introduced to Philippa Handyside who carries a chromosomal abnormality and turns to PGD following several attempts to establish a pregnancy by natural means. In this section we are not only presented with a clear explanation of the PGD technique (00:05:00 – 00:08:45) but also a demonstration of the emotional and physical cost of the procedure (00:14:11 – 00:18:36). Philippa describes the fertility treatment needed for PGD as “horrendous…just absolutely horrific” (00:15:27) and the devastation she felt when told the treatment had not resulted in an error-free embryo. After further rounds of fertility drugs she eventually gave birth to a healthy son.



This, of course is controversial enough in its own right, embryos that are not selected do not get implanted and do not get the opportunity to develop into a child. The programme hints at future controversies in this area. Using a quote from Princeton geneticist Lee Silver (00:12:40) and an old clip from another BBC science series Tomorrow’s World, we are presented with a brief discussion of the potential to move from screening for particular diseases to the potential to select between different embryos on the basis of anticipated intelligence or musical ability. There are two limitations here. The first is technological – you can only screen any one cell at any one time for one or two genes, not a whole battery of tests. Secondly, and most importantly, the characteristics can only be chosen from amongst the alleles carried by the parents, if a trait is not represented in their genomes it is not available. As Joyce Harper from University College London puts it “We’re not designing any babies. We’re not doing any genetic manipulation of the embryo. We can only select the embryo that the couples produce. So, if they’re not going to produce an embryo that’s very intelligent, we can’t select for it” (00:22:00).



It is at this point (00:22:35) that the episode moves on to think about gene therapy as a means to actually altering an individual’s genetic profile. The ground here has been covered previously in the Horizon episode Trial and Error (in fact some of the footage is exactly the same). The focus is on the work of Dr French Anderson, including his 1990 success in using gene therapy to treat Ashanti De Silva who had been suffering with a severe immune system deficiency caused by a genetic mutation. The episode also touches on the devastating blow the field received in 1999 when teenager Jesse Gelsinger died during a gene therapy trial in Pennsylvania. The section from 00:27:00 to 00:33:48 raises the ethical questions most clearly; in particular, the risks of an introduced gene getting into the germ line cells and being passed on to subsequent generations.

In the final section of the programme, the focus shift to cloning technologies. As with the earlier Life and Death…, both the cloning of Dolly the Sheep (00:34:56 – 00:35:38) and the subsequent production of Polly (00:35:40 – 00:37:30) are discussed. Polly, you will recall, is a genuine designer offspring; she has been genetically modified by the insertion of the human gene for blood-clotting protein Factor 9 into her genome.



Despite this apparent success of cloning mammals, a number of practical limitations and ethical qualms are identified. Cloning remains an imprecise science with substantial attempts leading to abnormality and loss of life. Added to this, even the viable products of some experiments have turned out to be rather different from the expected outcome; the programme illustrates this with reference to a genetically modified ‘supermouse’ with big muscles but an unexpectedly placid personality.



The programme concludes with a visit to the Life Centre in Newcastle, to discuss the relevance of their work on “therapeutic cloning”. The emphasis, in fact, is that work on manipulating embryonic stem cells, which is the basis of therapeutic cloning, is only looking for ways to treat diseases (though the impression given that no-one here is interested in adapting this work to make designer babies demonstrates a wilful avoidance of the fact that mavericks elsewhere may be very keen to exploit the lessons learnt through their research). This section certainly contains a nice synopsis of the goals of therapeutic cloning (00:41:35 – 00:45:48).



Overall, the programme gives helpful insights into a range of current developments in biomedicine whilst emphasising that ‘designing’ babies remains some way off.



National Geographic: Designer Babies

Designer Babies, from the National Geographic channel (60 minutes, TRILT identifier: 00564089), echoes many of the ethical and practical points raised in the two Horizon documentaries. However, it has an extended section on PGD and therefore may be the particularly useful if you are looking for a detailed consideration of this topic.



An Australian boy with Hyper IGM syndrome, an X-linked genetic disease, is the focus for much of the episode. His family seek to use PGD to produce another child selected to be both free of Hyper IGM and also a tissue-match for the older boy so that stem cells harvested from the umbilical cord can be used to treat the older sibling (there are echoes here of UK case involving the Hashmi and the Whitaker families). The story unfolds to show how the parent overcome the emotional and financial cost to have a new child who will provide the life saving stem cells their first son needs.



Unlike the Horizon documentaries, the issue here is one of “saviour siblings”, the production of a “spare parts baby” (00:02:30) and this raises additional ethical questions. For example, the family are concerned about the emotional burden on the new child when it grows up knowing that they were conceived to save their sibling. How would the child feel if, despite all of these efforts, the treatment fails? These are just some of questions raised in the programme. On the one hand you have parents desperate to do everything they can for their child “Until you’ve got a child, who is in a certain situation, I don’t think you can predict what decision you will make” (Mother; 00:01:31) and on the other you have people worried about the consequences for the new born “We need to do research into how our children are going to be affected by this” (Ethicist Dr Jeffrey Nisker; 00:12:55).



The programme also picks up on the use of PGD to select the gender of a child for non-medical reasons, e.g. a mother of four sons desperate to have a girl, and examines some of the ethical issues raised by this application of the technology. (Again, there are echoes here of UK cases, such as the Mastertons and the Chenerys).



In light of these worries, the programme examines the strengths and weaknesses of regulation and ethics committees regarding the uses of PGD. Views expressed range from Nisker, who fears that “in ten years the commercial companies that have been distributing this agenda will have altered us as human beings” (00:25:38) to one mother who states that she “didn’t know why she had to sit in front of an ethics committee to explain why she wanted a child” (00:27:10). Dr Greg Stock, a bioethicist and prominent commentator in this arena, agrees. He believes that the best people to make such a decision are the parents and the individual, since they are the ones directly affected. Some children, it is reported, have died while waiting for a decision by the regulatory authorities.



This debate moves on to a discussion regarding who has the right to decide who should, and who should not, have children. Lessons from the Nazi use of eugenics (00:33:49) are used to reinforce the view that central government is not the best place for such decisions to be made. What about parents’ rights to deliberately select a child that is deaf, and thus in the eyes of many people, “disabled”? The particular focus is on a couple that have both been deaf since birth but naturally conceived a hearing child. They see deafness, not as a disability, but as a part of their identity (00:36:02).



Designer Babies is an excellent resource to raise some of the ethical issues being raised by the more recent advances in PGD. It also features descriptions of what is involved in PGD (00:04:02 – 00:06:02), the history of PGD (00:07:07 – 00:08:40) and the genetic screening that takes place in PGD (00:20:27 and 00:40:00).



Which episode is the ‘best’ for teaching?
All three documentaries contain short sections that would prove very useful for raising discussion on the science and/or ethics involved in ‘designer babies’. Life and Death in the 21st Century certainly does not cover a number of significant developments which have occurred since it was made. If you have a copy languishing on the video shelf, it is certainly worth a watch; many of the ethical arguments are still valid. If, however, you’ve got access to Whose Afraid of Designer Babies? or National Geographic Designer Babies these are probably better. Either would be highly suitable for showing to a class; the preference may boil down to availability. At the time of writing (July 2007), the National Geographic programme has not been repeated in the UK since early 2006, whereas Whose Afraid… has been showing regularly on UK Documentary. For this reason, we plan to use the latter as the focus of some additional teaching resources – details to follow.



David Willis and Chris Willmott

『다큐 10+ 특선』 불임치료, 그 현장에 가다 - 맞춤아기

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제 목 『다큐 10+ 특선』 불임치료, 그 현장에 가다 - 맞춤아기
방 송 일 2009년03월11일 23:10:00
방 송 정 보 녹음연출 : 글로벌팀 조성희 PD
최근 아이의 눈색깔, 머리 색깔등 외모까지를 구체적으로 선택하여 낳게 해준다는 맞춤아기를 두고 윤리적인 문제가 대두되었다. 실제로 맞춤아기를 시도하는 한 부부의 구체적인 케이스를 통해 이 문제를 함께 고민해보자.

맞춤아기란 착상 전 유전자 진단(PGD)을 통해 인공수정을 거친 배아의 유전자를 검사해 원하는 배아를 자궁에 착상시키는 방법이다. 유전질환을 앓지 않을 아이를 골라 낳는 데 주로 이용되는 방법이지만, 최근엔 태아 성감별 등에도 이용하려는 이들이 많아 종교계 등에서는 PGD 자체에 반대하고 있다.
여기 PGD를 통해 원하는 아이를 낳으려는 부부 3쌍이 있다. ‘질’과 ‘이안’ 카터 부부는 고셰병으로 어린 딸을 잃은 경험이 있다. 맏이인 ‘캐머런’은 고셰병 유전자를 가지고 있지만 병이 나타나지는 않은 상태이고, 부부는 건강한 아이를 낳기 위해 PGD를 이용하고 싶어한다. ‘글렌’과 ‘앤드리아’ 애스퀴스 부부는 아들만 4형제를 뒀다. 딸을 낳는 게 소원인 부부는 PGD를 이용하고 싶지만, 영국에서는 PGD를 이용한 성감별이 불법이다. 부부는 딸을 낳겠다는 희망을 안고 키프로스로 날아간다. ‘새라’와 ‘피터’ 트레빗 부부는 중증장애아 ‘메이지’의 엄마아빠다. 피터가 ‘염색제전좌’ 유전자를 가지고 있기 때문에 부부가 낳는 아이는 메이지처럼 중증장애를 앓을 가능성이 높다. 이들 역시 PGD를 이용해 건강한 배아를 골라낸 뒤 자궁에 착상시키고 싶어하며, 1년간 PGD를 시도해온 부부는 결과에 상관없이 이번을 마지막이라고 생각하고 있다.
글렌과 앤드리아 부부는 채취된 난자가 3개밖에 되지 않아, 처음부터 마음 고생을 한다. 생성된 배아는 하나뿐이었고, 다행히 여자로 밝혀졌지만 배아는 착상에 성공하지 못한다. 새라와 피터 부부도 건강한 배아 하나를 얻었지만 역시 착상에 실패한다. 질과 이안 부부의 배아는 모두 고셰병 유전자를 가지고 있었지만, 그 중 셋은 병을 앓지 않을 것이라는 검사결과가 나왔다. 배아 중 하나는 착상에 성공했고, 부부는 제왕절개로 아들을 얻는다.