Personalised Healthcare

May 19, 2011

This is the 4th resource produced by Nuffield's education team to accompany their more chunky reports on ethical developments in biology and medicine

The latest in a series of educational resources to accompany major reports by the Nuffield Council on Bioethics are now available. Picking up from the 2010 Nuffield report on the ethics of Personalised Healthcare, the resources have been developed by the Reaching Out to Young People team. The materials are based around three case studies looking at the impact of different developments moving medicine away from the traditional patient-doctor consultation. These are: the availability of personal genetic profiles; the ability to buy medicines online; and the rise of the internet as a source of health information.

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).

Interactive tutorials on genetics and ethics at the PHG Foundation

May 19, 2011

*** 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

Darwin’s Dangerous Idea – Born Equal? (BBC2)

March 25, 2009

This episode of Darwin's Dangerous Idea can be viewed online via the BBC iPlayer until April7 2009.

In the three-part series, Darwin’s Dangerous Idea, broadcast on BBC2 to mark the 200th anniversary of the birth of Charles Darwin and the 150th anniversary of the publication of On the Origin of Species, broadcaster Andrew Marr explores the impact of the theory of evolution by natural selection on science, politics and society.

While the first and third episodes, respectively entitled Body and Soul and Life and Death, explore the historical spread of Darwin’s theory and the way it can be employed within conservation and ecology, the second episode, Born Equal?, includes a short section (between 00:45:12 and 00:56:20) that could be used in bioethics teaching.

Read the rest of this entry »

The Day Family – Bitter Inheritance (5)

July 24, 2007

In many ways, this final episode of the Bitter Inheritance series offers the clearest potential for use in teaching about genetic diseases.  This is partly because the focus is on Huntington’s disease (HD), a well-known and well-studied condition, but also the fact that the dilemmas the Day family go through paint a very vivid picture of the implications for the wider family of both the disease itself and of choosing whether or not to take a genetic test. HD is an autosomal dominant disorder of the nervous system – if you have the faulty gene you will get the disease.  It is a late-onset disease, symptoms normally start to appear when the sufferer is around 40 years of age and there will be progressive neurodegeneration over a 10 to 15 year period. The fact that the symptoms are not evident until that time means that people have often had their own children by that time, with a 50% chance that they have passed on the disease. Read the rest of this entry »

The Needell Family – Bitter Inheritance (3)

July 19, 2007

This 40 minute documentary follows Juliet and Rob’s struggle to start a family, and how they turn to Pre-implantation Genetic Diagnosis (PGD) to help them in their quest. With an extensive history of miscarriages, Juliet reflects on how it feels when she falls pregnant “As soon as you find you are pregnant you just get this terrible feeling that, Oh God here we go again”. Due to this history, the couple opt for PGD, described in the programme as a “highly controversial treatment”, in order to select healthy embryos. Juliet is a carrier for a chromosomal abnormality in which large fragments of DNA have swapped places between chromosomes. Known as a ‘translocation’, this disorder does not prevent a woman becoming pregnant but the foetuses cannot develop correctly and a miscarriage is routinely induced. The couple describe how “absolutely terrible” it was when Juliet did actually give birth to a premature baby who was born with some abnormalities but later died (00:04:24 to 00:06:38). This programme provides an excellent insight into both the practicalities of PGD and the emotional hurdles the procedure brings. Read the rest of this entry »

The Allen Family – Bitter Inheritance (2)

July 19, 2007

By a “cruel stroke of genetic fate”, the Allen family turn out to be affected by not just for one, but two horrendous genetic diseases. This programme, the second in the Bitter Inheritance series on genetic disease, begins by telling the story of Bethany, a young girl who was born with Sanfilippo syndrome. (Further information about this disease can be found at this BBC website). This is a rare autosomal recessive disorder, i.e. you need to inherit a faulty copy of the relevant gene from both parents. The disease causes the progressive degeneration of both the nervous system, including the brain, and will ultimately lead to Bethany’s death, probably during her mid-teens. With no cure available, the family frequently express their feeling of helplessness and frustration.  As John, her father, states “when you are told that your daughter is going to die… you can’t imagine it”. The family is provided with much support by friends and doctors who reassure the parents that she is happy and that “she’ll never know she has got it, and she’ll never be in any pain”.

After much deliberation, Bethany’s parents (00:04:24) decide they want to try and have another child. Without any sort of medical intervention, there is a 1-in-4 possibility that the new child will also have the syndrome. This raises a clear ethical question – knowing those odds, should the parents continue? If they do take that risk, are they prepared to abort an affected foetus? As it turns out, the new child is not a sufferer, but clips show the emotional rollercoaster taken by both parents along the way and the difficult decisions the have to make (00:19:50 to 00:20:32 and 00:30:19 to 00:38:20).

Whilst all of this is going on, it turns out that Bethany’s grandmother has Huntington’s disease (HD). Like Sanfilippo Syndrome, HD is a progressive neurodegenerative disease, but it differs both in the way it is inherited (in an autosomal dominant fashion, i.e. if you’ve got one copy of the gene, then you will get the disease) and at the time of onset (a sufferer normally starts to show symptoms in their 40s rather than aged 2 to 4). A section halfway through the episode (00:23:05 to 00:28:17) shows the burden on the already emotionally-strained family; as Jo, Bethany’s mother, puts it “If you think about it too much, you would crack up”. Jo’s sister summarises the nightmare scenario which might unfold over the next ten years: “For Jo, she could have a mother that’s ill [with HD], a daughter who’s sick [with Sanfilippo], a sister who is seriously ill [with HD] and find that she is also seriously ill [with HD]”. Read the rest of this entry »