Exploiting Genetic Knowledge – Visions of the Future (2)

January 11, 2008

The Biotech Revolution, the second episode of the BBC4 Visions of the Future series, continues to describe ways in which humanity is making a “historic transition from the age of scientific discovery to the age of scientific mastery”. Presenter Michio Kaku suggests that unlocking the basic code of life will allow us to “predetermine the destiny of life itself” and to manipulate it at the most fundamental level (Start-00:02:00).

The programme begins with Kaku having his “medical future rather than history” diagnosed via a series of genetic tests for complex diseases such as heart disease, diabetes and Alzheimer’s. He describes this as an “owner’s manual” which will enable him to have greater control of his health, and to allow others to perhaps prolong their life by decades (00:02:20-00:06:20 and 00:20:05-00:23: 20). As a scientist, he is eager to discover what secrets his genome may contain however, as a person, he says “wait a minute, this could be a Pandora’s Box… I’m looking at a side of me I have never seen before, a side that has potential medical problems lurking there”.

Some of the issues raised here mirror those found in the ITV1 broadcast The Killer in Me, which illustrated particularly well the anguish associated with having such tests and the way actions could be taken in light of the results. In this programme, in contrast, there is greater emphasis placed on the potential impact on relatives and wider society that may result from taking the tests. “We really want to respect your privacy and the privacy of your relatives” the physician emphasises to Kaku.  Much of the future of this testing, if not the present, relies upon “the last great discovery of the 21st century, the Human Genome Project”.  Kaku believes that this event holds such significance that we will look at the history of medicine in two eras, “before genome and after genome”. “Having unravelled the fundamental code of our biology the stage is set for us to manipulate it” he adds (00:06:25-00:09:20). Read the rest of this entry »


Are hybrid embryos an ethical step too far? – The Big Questions

December 31, 2007

Following the Human Fertilisation and Embryology Authority’s decision to approve the creation of ‘animal-human’ hybrid embryos, or “cybrids”, the inaugural episode of the BBC’s new ethics show The Big Questions (BBC1, Sunday Sept 9th 2007, 10 am) included a fifteen minute debate on the topic. The programme provides some useful material for discussing the issue.

This initial post outlines the thrust of the discussion.  Interested readers are strongly encouraged to look at the extended commentary Science and ethics of cybrids – reflections on some recent media coverage, which includes not only a fuller account of the exchanges on The Big Questions, but also draws upon a similar discussion on The Guardian’s Science Weekly Podcast of September 10th. The relevance of a number of recent scientific papers on the biology of stem cells is also considered.  You may also like to watch a BBC news report following the announcement – go to their News page ‘Human-animal’ embryo green light and follow the ‘Watch’ link on the right-hand side. Read the rest of this entry »


Introducing our “Extended commentaries”

September 6, 2007

As the number of resources on BioethicsBytes continues to grow, so too does the range and diversity of the materials we are offering.  We have recently launched a new genre, the BioethicsBytes Extended Commentaries.  As the name implies, these articles pick up on one or more theme arising from a book, film or programme but discuss the issue(s) in a broader context. The Extended Commentaries draw on a wider range of academic texts than would be usual for a standard BioethicBytes review. They will normally be linked to a shorter post on the main blog.

At present there are four Extended Commentaries on:

Transgenics and a world of “limitless possibilities” – concerning issues arising from the first documentary in the Animal Farm series (Channel 4, March and April 2007), including medical v non-medical applications of transgenic organisms, connections with the debate about genetically-modified (GM) food, and a consideration of what is ‘natural’

The “pharmaceutical farm” – discusses speciesism, identity and the ethical treatment of experimental animals, as prompted by the second episode of Animal Farm

Making “creatures that work for us” –  looks at the medical benefits from transgenic animals, the modification of animals for our pleasure (specifically the transgenic GloFish) and the development of animals specifically to counter mankind’s impact on the environment, all of which were issues arising in the third programme of the Animal Farm series

The future of our families? – a consideration of some of the ethical concerns about saviour siblings, including illustrations drawn from Jodi Picoult’s novel My Sister’s Keeper

Further Extended Commentaries will follow in due course.


The Future of Our Families? – ‘My Sister’s Keeper’ (Picoult, 2004)

July 24, 2007

To date only a handful of, so called, ‘saviour siblings’ have been born worldwide. These children (the oldest is now 8 years old) were conceived by IVF and have been specially selected to be tissue matches for an existing, ailing sibling. In general, these siblings suffer from incurable – though often treatable – anaemias or leukaemias, some of which have a genetic component. Their newborn siblings, as the term saviour suggests, are ‘designed’ to save their lives. This is the background to American author Jodi Picoult’s 2004 novel My Sister’s Keeper. The story follows sisters’ Kate and Anna Fitzgerald as they, and their family, confront extraordinary circumstances.

Picoult (2004). My Sisters Keeper.

Picoult (2004). “My Sister’s Keeper”. Hodder and Stoughton: London.

Kate, 16, who suffers from Acute Promyelocytic Leukemia (APL) – a rare and aggressive form of cancer – is dying. Her younger sister, Anna, 13, was born to be her ‘saviour’. Anna is an human leukocyte antigen (HLA) matched donor for Kate, and while in real cases it is only umbilical cord blood that has been donated, Picoult’s novel imagines a situation in which much more is required. As Picoult’s story progresses we learn that Kate did indeed receive a transfusion of cells taken from Anna’s umbilical cord blood. This blood, rich in compatible stem cells, was intended to repopulate her bone marrow and effectively cure her leukaemia – a treatment which apparently worked. However, as is obvious from what, in the book, constitutes the current situation, this was only a temporary phenomenon. Picoult’s Kate suffers a relapse, which, following initial treatment with Anna’s compatible platelets and ultimately her donated bone marrow, locks them both into a seemingly endless cycle of, not only, operations and hospital visits, but also, responsibility, guilt, love and resentment.

Over the years Picoult describes the numerous procedures the character Anna goes through in her unchosen efforts to fulfil the role of ‘saviour’. This culminates in the prospect of kidney donation – the book’s present day. Faced with this Anna hires a lawyer, Campbell, and takes her parents to court in order to “petition for medical emancipation” (Picoult, 2004: 49). The book follows the build up to, conduct and aftermath of this action, through which Anna fights for the right to refuse this donation – an outcome, both she, and her family, know Kate will die without.

As with many works of fiction, Picoult takes current science, imagines ‘what could be’, and explores some of the social, psychological, emotional and – in this case legal – consequences that might follow. As a work of fiction My Sister’s Keeper seems a scarily realistic, though also, moving picture of a normal family under extreme pressure. However, as a source of insight into the ethical dilemmas presented by the creation of ‘saviour siblings’ it also has its value. While not presenting arguments according to philosophical principles, this book functions as a very effective exploration of possible social implications and potential endpoints of the use of HLA typing in this way. Below are just some of the common bioethical concerns about the creation of saviour siblings that My Sisters Keeper addresses (the page numbers given here refer to episodes, conversations or interactions within the book that highlight each issue particularly well):

  • The welfare and best interests of the child to be born – pages 286-289 illustrate how the donation of umbilical cord blood may turn into a succession of more invasive and therefore more ethically problematic donations, also how, in practice, the best interests of the saviour sibling may be balanced against those of the child to be saved
  • The instrumentalisation of the child – pages 64-65 and the bathroom scene on page 25 show the Fitzgeralds as a complete family with Anna as an addition only to save Kate, while pages 53-54, 196-197 and 405-407 show her as a loved and valued family member, just like any other
  • Consent – pages 20-21 and 292-296 provide a good illustration of how consent to non-therapeutic medical treatment (e.g. bone marrow or blood donation) is handled currently for minors
  • The long-term experience of the child – pages 1-2 and 89-90 are short but powerful examples of how Anna, at 13, experiences being a saviour sibling, and how that knowledge has become a part of her identity.

These themes are explored in greater depth in the BioethicsBytes Extended Commentary that accompanies this post. The commentary also highlights how Picoult’s story emerged from ethical arguments around the creation of saviour siblings in reality, and how My Sister’s Keeper elaborates some of these arguments through the multiple viewpoints of the characters and their interactions.

My Sister’s Keeper was written by Jodi Picoult, and published in the UK in 2005 by Hodder and Stoughton, London. ISBN: 9780340835463.

Update 4th April 2015: The film adaptation of My Sister’s Keeper is now available to members of subscribing institutions via Box of Broadcasts.


Designer Babies – three documentaries

July 12, 2007

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


The “Pharmaceutical Farm” – Animal Farm (2)

June 20, 2007

In this second of three programmes, Imperial College Research Fellow Olivia Judson and food critic Giles Coren investigate several more biotechnological creations on Channel 4’s virtual Animal Farm (originally broadcast on 26th March 2007; TRILT identifier 0062CC6E). Development discussed in this episode include tissue engineering – used here to make a replica of Giles Coren’s nose – and footage on transgenic cows, sheep and tobacco plants. As the programme’s guides meet these animals and their creators, they not only elborate some of the themes from Episode 1, but also draw out some additional ethical issues surrounding the latest uses of techniques of genetic modification on the “pharmaceutical farm” (00:47:08).

In particular they meet a herd of cloned, transgenic cows “built…from the ground up, to help cure some of the most dangerous diseases on the planet” (00:03:29), including anthrax and the currently incurable Ebola. These cows have a series of gene-knockouts (that is, genes of their own which have been engineered to stop normal expression) but also, more significantly in this context, carry a human ‘microchromosome’ (HAC), which “has the human antibody gene in it” (00:03:48). The purpose of this modification is to mass-produce human antibodies, which thanks to the HAC, can be harvested in large quanities by filtering the cows’ blood. According to the programme this is the only way to achieve this short of repeately innoculating humans, but, as Olivia says, “we can’t go round infecting people with antrax” (00:05:12).

In the course of the programme Olivia also encounters, what are described as, ” the sheep that is just a little bit human” (00:25:27). In what is a very technical, though understandable, section of the programme, Prof. Esmail Zanjani describes how human adult stem cells can be injected into the embryo of a sheep while in the womb, such that “the lamb, when born, will contain sheep and human cells” (00:28:04). This is termed a process of ‘humanisation’. Prof. Zanjani is, however, only really interested in the sheep’s organs, as opposed to creating “a strange new hybrid” (00:29:52), as a result of cell fusion – something that the programme identifies as one of the risks of this technique. He is interested in growing “human parts inside animals” (00:25:01), for the purposes of patient specific organ transplantation. As he says, these sheep contain, for example, livers which are “at least 10 to 15 percent made up of the liver cells derived from that patient” (00:29:04).

A third transgenic organism featured in the show is a variety of 10ft, transgenic tobacco, engineered to ‘manufacture’ cyanovirin. This chemical, produced by a gene found only in a specific type of blue-green alge, is vital in the global battle against HIV-AIDS. This tobbaco plant’s creators intend the cyanovirin to be used for an HIV barrier cream, which, since they are harvesting the seeds as well as the leaves for global supply, could – in theory – be made in, and by, any country in the world.

Aside from further discussion of the ethical issues identified in episode 1 (for example, the differential treatment – and assesment – of plant and animal transgenesis), episode 2 is an excellent resource for addressing questions of whether transgenics blurs, or even, breaks down species barriers in a morally significant way. This can be broken down into questions around:

  • Speciesism
  • Identity
  • The ethical treatment of experimental animals

Each of these issues is explored in the BioethicsBytes Extended Commentary that accompanies this post (pdf).

All timings given here are approximate, and correspond to quote timings on the ERA recording of Animal Farm – Part 2 of 3, CH4 2100-2200pm, 26 March 2007.


Tissue Engineering – The Farm Revealed (3)

June 13, 2007

The third episode in The Farm Revealed series (Channel 4, 13th June 2007) a spin-off from the Animal Farm documentaries, draws on footage concerning tissue engineering. In line with its more “entertainment oriented” approach to this material, it largely focuses on attempts by Dr Chris Smith and presenter Rufus Hound to grow a burger in the studio from a joint of meat.

On the serious side, this programme explores the techniques of cell culture and tissue engineering required to grow organs – for example the nose of Giles Coren, presenter of Animal Farm. Documentary footage shows the process of scaffolding cells, growing cartilage, and finally attaching skin. The purpose of this is to help heal burns, repair bones, etc. This leads on to a discussion of stem cells – the cells used growing these organs.

Initially we are introduced to the use of stem cells in the context of therapy: here in the treatment of severe combined immune deficiency (SCID), where haematopoietic stem cell transplants are used to populate bone marrow with T-cell producing cells. However, in a clip from Animal Farm, their use in growing organs is revealed.

Olivia Judson investigates how stem cells taken from human patients and injected into the live foetuses of sheep, have the effect of “humanising” their organs. The sheep are referred to as “up to 15% human” (00:13:58), and contain, both human, and sheep, cells. In scientific terms these are chimeric animals. Their creator, Prof. Esmail Zanjani, intends these sheep to become a source of patient-specific organs for transplant. The obvious endpoint of this is summed up in the quote “one day we might all have a personalised flock of sheep on standby to provide us with new organs if any of ours fail” (00:18:05), the ethics of which is explored briefly in the studio.

Perhaps the only thing of real value that this programme adds to the presentation of the same material in Animal Farm is the brief interview with artist Oron Catts, who uses tissue engineering techniques to create works of art.

Though this programme does acknowledge that tissues, like burgers, cannot be grown and engineered overnight – let alone in the course of a half hour TV show, and the explanation of the potential of stem cell is concise and accurate, it continues to suffer from the deficiencies noted in previous posts concerning episode 1 and episode 2. In this respect, for the purposes of teaching, the original series Animal Farm remains, both scientifically and bioethically, a much more appropriate resource.