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.

Three-parent IVF and Mitochondrial Diseases

June 12, 2013
The report by the Nuffield Council on Bioethics was produced in 2012

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.

The first report Novel techniques for the prevention of mitochondrial DNA disorders: an ethical review was produced by the Nuffield Council on Bioethics (June 2012) – see summary of key findings.

In March 2013 the Human Fertilisation and Embryology Authority published their Advice to Government on Mitochondria replacement.

Both reports were largely in favour of the development. For examples of arguments against the technique see, for example, this post by the Christian Medical Fellowship.

A short animated video on the topic has been produced by second year students at the University of Leicester.

Fat Family Tree

June 7, 2013

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.

Donor conception: ethical issues

April 24, 2013
The Nuffield Council on Bioethics produces one or two authoritative reports each year

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.

1. Ethical issues regarding donor conception

This short film picks up on a broader range of issues associated with donor conception (CoI disclaimer: this video is produced by some of my students)

2. Sperm donor has over 70 kids

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.

3. “You’re not my mother!”

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.

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

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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