June 30, 2015
Gene therapy was the subject covered in the best video produced by students in the 2014-15 cohort of Medical Biochemists at the University of Leicester.
This is an excellent example of “whiteboard animation” – you don’t get such an effective result without significant planning. The video is wrong to say treatment of X-SCID was the first successful use; the first case involved Ashanti DeSilva, who had ADA-SCID. It does not include any coverage of genome editing methods, which are the most exciting new development in this area. Nevertheless, a very useful primer on the topic.
June 12, 2013
Wouldn’t it be great if disease caused by possession of a faulty gene could be treated at the genetic level rather than simply influencing the symptoms? Despite some initial success, the approach has proven harder to achieve in practice than was originally envisaged.
This short video on the topic was produced by second year undergraduates at the University of Leicester.
Previous Bioethicsbytes posts on the same theme please see the Categories menu to the right. Posts include:
December 31, 2011
Rise of the Planet of the Apes, now available on DVD, was one of the blockbuster releases in the summer of 2011. A prequel to the classic series of films (5 cinema releases between 1968 and 1973, TV spin-off and Tim Burton’s 2001 remake of the main Planet of the Apes), the new movie tries to offer a plausible mechanisms for the evolution of apes into a dominant global force.
(Warning: contains spoilers!) The new film is a veritable gold-mine for discussion of ethical topics, it would make as excellent vehicle for an engaging “film night”. In terms of bioethical issues, the film touches on all of the following:
- Research ethics – there are lots of examples where aspects of the conduct of research are raised (some of which are picked out specifically in the list below). The motivations for doing research are touched upon at several points in the film – these include financial gain, fame and a desire to do good, both for mankind in general and specifically for the benefit of a relative in need. GenSys boss Steven Jacobs (David Oyelowo) is the embodiment of profit as a driver for research whereas Will Rodman (James Franco) represents more noble aspirations. A discussion of the ethics of research funding could follow naturally. Read the rest of this entry »
May 19, 2011
Here’s a useful resource for teaching about bioethics and the ethical implications of new developments in genetics. The PHG Foundation website has a large number of tutorials and other educational activities on these topics. You need to register with the site to see them, but there is no fee and the “cost” of registration seems only to be a periodic e-mail newsletter also containing helpful updates.
The PHG Foundation grew out from the Public Health Genetics unit
If I understand correctly funding for the educational developments at PHG has come and gone so nothing new will be appearing in that section of their site – but the stuff that’s already there is definitely worth a look.
The tutorial on moral theories is just one of the bioethics-related resources on the PHG Foundation site
October 13, 2010
Sister is Rosamund Lupton's first novel
(Warning: contains minor spoilers!) Not to be confused with Jodie Picoult’s My Sister’s Keeper, which is about Preimplantation Genetic Diagnosis, Rosamund Lupton’s 2010 novel called simply Sister centres on a gene therapy trial.
The Hemming family know that they harbour the gene for cystic fibrosis (CF); Beatrice – the narrator of the story – has seen her younger brother Leo die of the disease and her pregnant sister Tess has been told that her child will also be a sufferer.
At the start of the book Tess has gone missing and Beatrice flies back from the USA to look for her. As Beatrice recounts the events that follow her search for her sister, it is clear that Tess’s decision to participate in a clinical trial of a gene therapy cure for CF lies at the heart of the story.
In terms of bioethics education and an explanation of some of the ethical tensions associated with gene therapy, the stand-out passage begins on p231 when Beatrice goes to visit Chrom-Med, the company behind the official trial. Chrom-Med use of an artificial chromosome to deliver a working copy of the CFTR gene, which codes for the Cystic fibrosis transmembrane conductance regulator protein.
The passage could be read to a class to introduce some of the issues. I would suggest starting with “At just before 9.30 a.m. I arrived at the Chrom-Med building…” on p231 and running through to “When will you be testing it on humans? You’ll make a killing then, wont you?” on p233. Reading this section aloud takes about three and a half minutes.
Alternatively – the novel was adopted as the Radio 4 Book at Bedtime for ten weekday nights (24th Sept to 1st Oct 2010) and was cited in Quentin Cooper’s Material World on 27th September 2010, so there may be valuable audio extracts there. Unfortunately these shows are no longer on iPlayer but I am investigating availability of audio recordings.
January 26, 2009
Narrator Bill Paterson: "A child born in 1953, the structure of DNA has just been discovered. 1989 and this baby's genetic fingerprint can be identified. The first single gene for Huntington's disease has been discovered. 2003 this child's entire genetic code can now be read and faulty genes in his DNA can be adjusted. Another birth, but this time no ordinary miracle. The baby's sex and eye colour were decided before she was conceived; also her hair, the shape of her nose and her intelligence. The date of her birth? Perhaps only a few years from now. She's born from a revolution in genetics. A revolution where each new step brings new questions of ethics and responsibility. And as the promises of the science gets greater, so do the questions for all of us get bigger."
DNA – The Promise & The Price provides an excellent resource for discussing the ethical implications of advancing genetic research, focusing on; gene therapy, stem cells and cloning. The documentary examines the frontiers of genetic science, revealing how researchers attempt to fulfil DNA’s potential to help cure and prevent disease. It also questions how some aspects of these novel technologies may have significant consequences for individuals and society. Bill Paterson: “Much is promised by genetic science, the manipulation of our genes. But can it deliver? And if it does are we ready to take responsibility for meddling with the very fabric of life itself: our DNA”.
Professor Steve Jones: "When it comes to medical research, any medical technology that works, it is very quickly accepted by the public. Ethicists may not like it, scientists may not like it, but the public, if they believe it works they will accept it, and the legislation will always follow. Ethics has always followed science, it's never led it and I don't see any reason why genetics is going to be any different. Ethicists would love to tell geneticists what to do, but I'm afraid the geneticists are not going to listen."
The topics found in DNA – The Promise & The Price include: genetics; genetic diseases; gene therapy; transplantation; stem cells; and cloning can all be found in the UK National Curriculum. Please note all timings mentioned include advertisement breaks – (00:04:51 – 00:08:00, 00:25:31 – 00:28:40 and 00:46:50 – 00:50:00)
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February 12, 2008
The ethics of life extension is an immensely complex topic. It touches on a number of social and political issues, though also philosophical and metaphysical perspectives, and draws us into a consequentialist calculus over the rights of people living now and those of future, unborn generations. A number of these issues are explored in the thought provoking Channel 4 documentary Do You Want To Live Forever?, in which writer and director Christopher Sykes, follows biogerontologist Aubrey de Grey in his quest to be the man that conquers ageing.
|Biogerontologist, Aubrey de Grey (from Do You Want To Live Forever?, Channel 4, February 3rd 2007, 18.35)
In addition to extensive footage with de Grey himself, the programme also features a ‘cast of characters’, from de Grey’s mother Camilla, to award winning physicist Freeman Dyson. In interviewing each of these characters Do You Want To Live Forever? offers a number of different perspectives on the ethics of life-extension research. Although the views of different commentators are spread throughout the 75minute programme, they provide an excellent source of capsule quotes which articulate many of the ethical arguments and issues in the debate around life-extension. Read the rest of this entry »