Incidental findings in biomedical research

June 16, 2015

Investigations such as genome sequencing and brain imaging have the potential to reveal details about the patient of research subject which were not the principal reason for the study. The ethical issues associated with such “incidental findings” is the subject of this short film, made by students at the University of Leicester.

The video was rated the third best produced by students in the 2014-15 cohort.

People interested in knowing more about the topic might also like to read:
Green et al. (2013) ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing Genetics in Medicine 15:565-574

Vernooji et al. (2007) Incidental Findings on Brain MRI in the General Population New England Journal of Medicine 357:1821-1828


Direct to Consumer Genetic Testing

June 12, 2013
The Nuffield Council on Bioethics report about Personalised Healthcare includes consideration of DTC Genetic Testing

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 following link offer more details about: Teaching resources using the Nuffield report on medical profiling

You may also be interested in the post Is there a gene for oversimplistic analysis? from our sister site Journal of the Left-handed Biochemist.


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


Human Genome Project: 10 years on

July 1, 2010

The tenth anniversary of the announcement that the human genome had been  ‘completely’ sequenced, has led to a large number of programmes and publications reflecting upon the impact that this information is having upon biomedicine. On 24th June, Today, the flagship current affairs programme on UK Radio 4, included a very interesting interview with John Sulston and Francis Collins the men who, respectively, had headed up the UK and USA ends of the publicly-funded consortia. The interview (7 minutes) can be heard via this link, and a transcript can be found here.


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

March 25, 2009
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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.

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The Daily Politics Show – “Should we be more wary of genetic screening?”

February 9, 2009
Watch this edition of The Daily Politics Show via BBC iPlayer (freely available until February 10th 2009)

The Daily Politics Show

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.

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DNA – The Promise & The Price

January 26, 2009
"A child born in 1953, the structure of DNA has just been discovered. 1989 and this babies 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 babies 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."

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."

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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”.

"When it comes to medical research, any medical technology

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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BBC Radio 4 Today programme – Ethical issues in prenatal diagnosis and screening

January 22, 2009
Listen again via the BBC Radio 4's Today programme archive

Listen again via the BBC Radio 4's Today programme archive

This brief post concerns a short section of BBC Radio 4’s Today programme, broadcast on January 7th 2009. The clip itself is approximately 4.5 minutes long and features interviews with Professor Simon Baron-Cohen, of the Autism Research Centre, and Joy Delhanty, professor of human genetics at University College London, who prospectively discuss the ethical issues involved in prenatal testing for autism. It was broadcast alongside the corresponding edition of the BBC News’ weekly column Scrubbing Up, in which leading clinicians and experts give their perspectives on various issues in health and bioethics.

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Epigenetics – The ghost in your genes

June 30, 2008

 
Epigenetics – Turning genes on and off  

The BBC Horizon documentary The ghost in your genes, successfully explains a particularly complex field of science. Genetic inheritance has historically been thought of as involving the transmission of DNA from one generation to the next affected by occasional mutations in the DNA itself (00:04:37 – 00:05:50). “Up to now, inheritance is just the genes, the DNA sequence. I suspect that we’re going to be able to demonstrate that inheritance is more than that”, explains Professor Marcus Pembrey from the Institute of Child Health, UCL. A few scientists had hypothesised that the conventional genetic model and mode of inheritance was too simplistic to explain the complexity of human beings. The revelation that the human genome likely contains only about 30,000 genes (00:08:54 – 00:11:33), coupled with increasing experimental evidence, now leads scientists to believe that other factors allow genes to be switched on and off in response to environmental stimuli. The consequences of which may affect subsequent generations.

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