The Nuffield Council on Bioethics report about Personalised Healthcare includes consideration of DTC Genetic Testing
The fall in the cost of DNA sequencing has opened the door to providing an individual with genetic information on such issues as paternity and the risk of developing or passing on a particular genetic disease. Some services are available via formal channels, but there is also a burgeoning market in direct-to-consumer (DTC) sales of genetic information and the associated interpretation of that data.
This video, made by second year students at the University of Leicester, looks at some of the ethical issues arising from the availability of personal genetic data direct from commercial companies.
The report by the Nuffield Council on Bioethics was produced in 2012
In the past year, two major reports have been published concerning the ethics of “three-parent IVF”, in which a donated egg would be used to overcome disease arising from the small amount of genetic material found within mitochondria, the energy factories of the cell.
Here at BioethicsBytes we aim to recommend good clips from TV programmes that might be useful in discussing ethics associated with biology and biomedicine. We don’t usually have time to offer any warnings against watching particular programmes. One very disappointing recent pseudo-documentary was Channel 4’s offering Fat Family Tree (First broadcast 23rd May 2013, TRILT code: 03163CBC). We had been promised insight into “whether unlocking the secrets of families’ genes can help provide an answer to weight problems” with the participants taking “a unique DNA test to find out if the genes they have inherited could help explain their weight problems”.
Unfortunately, the reality was very superficial. Luckily for me, Linda Wijlaars over at the Progress Educational Trust’s BioNews has already written an excellent harsh-but-fair critique of the show.
The Nuffield Council on Bioethics produces one or two authoritative reports each year
In April 2013 the Nuffield Council on Bioethics published a report on the ethics of donor conception. Their reflections focused specifically on ethical aspects of information sharing: if donor-conceived individuals should be told about their origins and, if so, when and how this knowledge should be passed on. Their conclusions, summarised here, are grouped into four categories:
policy affecting potential parents;
policy affecting parents and donor-conceived people during childhood and adulthood;
policy affecting donor-conceived adults who do not have access to information (there were significant changes in UK legislation relating to anonymity and record keeping in both 1991 and 2005); and
Policy affecting donors.
In an illuminating blog post, Dr Rhona Knight, Chair of the Working Party, unpacks some of the thinking that went into the Council’s ultimate recommendations. Concerned about the potentially adversarial tone of discussion “rights”, the report instead focuses on “interests”. A variety of stakeholders are identified, including the nurturing parents, the genetic parent and the child themselves. The latter might be interested in knowing the fact that they are donor-conceived and about their genetic heritage, particularly as it might relate to any potential health issues.
As regular users of BioethicsBytes will know, our major focus is on multimedia resources to help in teaching about bioethics. In this regard, here are a number of online videos that may be useful.
This two-handed studio discussion focuses on the lack of regulation in the USA which has led to various individuals being the biological father to dozens of children. Their discussion includes contrasting with the situation in the UK where there is tighter regulation.
This clip more closely aligns with the issues raised in the Nuffield report. Helane Rosenberg relates an incident when her daughter used the fact she is not her genetic mother as an angry response to having a request to watch TV snubbed.
If you have any other suggestions of videos for teaching about ethics and donor conception I’d be happy to consider them for addition to this list.
The story of Christina and her decision about whether or not to buy a test for an inherited disease is one of the new resources
(Note: anyone who has ended at this post looking for “personalised healthcare” in the pharmacogenetic sense might like to know that this was the subject of a different Nuffield report in 2003 and hence it was not included in the 2010 document).
*** UPDATE July 2018: Unfortunately these resources are no longer available (see comment below) but I have left the post in case anyone was looking for them ***
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
The edition of The Daily Politics Show broadcast on BBC2 on February 3rd 2009 contained an item on the use of embryo screening during IVF (see 00:15:42 to 00:22:25). The section begins with a short explanatory VT, which covers the technique of prenatal genetic diagnosis – PGD – and its uses in IVF, and some of the main ethical positions. The programme’s hosts – Andew Neil and Sangita Myska – then discuss the ethical implications of genetic screening and embryo selection with Professor Robert Winston. This short post summaries the main bioethical arguments put forward in this 7 minute clip, and suggests how it may be used in teaching.
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)
Organ donation is one of the miracles of modern medicine; the ability to transplant tissue from one person to another without rejection has brought dramatic improvements in the day to day lives of thousands of people, in many cases it is literally life-saving.
At present, however, the sad reality remains that demand outstrips supply. According to the Transplant Activity in the UK report for the financial year 2007/2008: 3235 transplant operations took place, but 7655 people were waiting for a transplant (up more than 6% from previous year), and 506 patients died while waiting for an organ transplant, (it is thought that this number could actually be as high as 1000 per year).
The debate that surrounds organ donation is fuelled by society’s moral obligation not to allow these people to die needlessly. When a person dies and they are not on the Organ Donation Register (ODR) and/or their family do not grant permission for their organs to be donated, then none can be used to help those suffering on the waiting lists.
The UK Government is desperate to improve the number of organs available for transplantation. In 2006 this led to the establishment of the Organ Transplant Taskforce, chaired by Elizabeth Buggins, in order to ‘identify barriers to organ donation and recommend actions needed to increase organ donation’. Their most recent report The potential impact of an opt out system for organ donation in the UK, published 17th November 2008, has received widespread media coverage. With the aim to increase the number of people on the organ donation register, they examined potential benefits and the viability of a move from the current ‘opt in’ organ donation system, to a ‘opt out’ system where by every citizen in the UK is automatically registered to donate their organs when they die unless they actively decide not to.
This post highlights relevant and useful online clips whilst briefly discussing the central ethical arguments presented by the report. It also complements this with suggested questions to use while discussing the topic.
Visit the Inside the Ethics Committee homepage at BBC Radio 4
The fourth series of BBC Radio 4’s bioethics programme Inside the Ethics Committee began on August 6 2008, and discussed some of the ethical issues involved in the creation of ‘saviour siblings’ (first broadcast on BBC Radio 4, at 20.00, August 6 2008 and repeated on August 9 2008, at 22.15). Vivienne Parry and a panel of experts discuss the ethical issues around real-life medical cases, on this occasion the dilemma involves a young child, Catherine, and her medical treatment. Previous BioethicsBytes posts have noted the utility of this series (see the post Making tricky decisions – Inside the ethics committee), and this episode is no different.
Shortly after she was born Catherine was diagnosed with Diamond Blackfan Anaemia (DBA). DBA is a rare blood disorder caused by a genetic mutation. In general, its treatment is “gruelling” (00:02:27) and the prognosis is poor. As in several previous cases (notably, the Whitaker, Fletcher and Mariethoz families), Catherine’s parents were offered the option of using preimplantation genetic diagnosis (PGD) for tissue typing alone in order to create a ‘saviour sibling’ whose umbilical cord blood could be used to treat Catherine’s DBA.
Many of the ethical issues involved in this choice have been dealt with in past BioethicsBytes posts (see The Future of Our Families? and the extended commentary that accompanies that post), however this edition of Inside the Ethics Committee brings consideration of these issues up to date. Though the majority of the ethical issues raised are covered in our existing posts, some of the additional details noted here about DBA and the testing procedure introduce new complications into the ethical debate.