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


Headline Bioethics: The balance of safety in publication of H5N1 research

September 3, 2013

[A printable version of this Headline Bioethics Commentary is available via this link]
H5N1

Author: Nick McDonald

Clip: Experts delay call on releasing controversial H5N1 work

Date of story: 17th February 2012

 

Summary of story: In the period 2003–2011, 566 cases of people infected by bird flu worldwide were reported to WHO (2011), with 59% of the cases being fatal. The virus has been known to infect people since 1997 (Grady and Broad, 2011), but only through infected birds, and not via person-to-person transmission(Yong, 2012b). Herfst et al (2012) and Imai et al (2012) mutated H5N1 to see if it could acquire the mutations necessary for airborne transmission between ferrets (considered a good model for humans) in the wild. This research was due to be published in the journals Nature and Science, but the National Science Advisory Board for Biosecurity (NSABB) asked the journals to delay publication, and recommended that key methods should be omitted (Grady and Broad, 2011) due to fears of the virus being released “by error or by terror” (Keim, 2012) and the “potential risk of public harm to be of unusually high magnitude” (Berns, 2012). Eventually in March of 2012 the NSABB agreed that the two papers should be published in full (Yong, 2012a). The video from February 2012 reports on the decision to delay publication.

Discussion of ethical issues: The decision about whether or not to publish details of the process by which H5N1 could be render easier to transmit is a good example of a dual-use dilemma, defined by Atlas and Dando (2006: p276) as “the generation and dissemination of scientific knowledge that could be misapplied for biological weapons development and production”. Kuhlau et al (2011) argue that if a dual-use technology poses a legitimate threat, the science community is obliged to develop, implement and adhere to precautious measures to meet the concern. Read the rest of this entry »


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.


DNA databases

June 12, 2013

For many years, the UK has utilised a National DNA database. This is a powerful tool in crime-fighting but is ethically controversial. The recent US Supreme Court decision (Maryland v King) rehearses some of these issues in an American context (see various posts on the Stanford Law and Biosciences blog for further reflection on the ramifications of the Supreme Court case).

The following video, which included an interview with DNA fingerprinting pioneer Sir Alec Jeffreys, was produced by second year students at the University of Leicester.

Users of Bioethicsbytes interested in teaching about the ethics of DNA databases might also be interested the following posts:


Gene therapy

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:


Epigenetics and ethics

April 12, 2013

It is a well established truth that not all of our genes are switched on in all of our cells all of the time. A fundamental role in the control of gene expression is played by transcription factors encoded within the DNA itself. In addition to this, however, there is now increasing recognition of the importance of an additional layer of genetic modification over and above the sequence of A,C,G&T letters in genome.

The epigenetics teaching resources have been developed by Lyndsey Wright as part of the public engagement with science component of her PhD (funded by the BBSRC)

The epigenetics teaching resources have been developed by Lyndsey Wright during the public engagement with science component of her PhD (funded by the BBSRC)

This “epigenetic” regulation can be influenced by environmental factors and hence questions about the ethical significance of epigenetics are emerging. Two different resources for looking at these bioethical dimension of epigenetics have recently been launched.

Firstly, PhD student Lyndsey Wright has taken the lead in the developed a series of resources on epigenetics and ethics which can be used with A-level students and undergraduates.

Four case studies are included on:

The resource, which is part of the wider Virtual Genetics Education Centre, includes teachers’ notes, student worksheets and PowerPoint presentations as well as links to further reading.

The second new resource is a video on the science and ethics of epigenetics.

The video includes consideration of Jesus and his (fictional) twin Joshua

The video includes consideration of Jesus and his (fictional) twin Joshua

This film was made by second year undergraduates at Leicester as an assessed piece of work. The video includes interviews with a number of scientists who are researching aspects of epigenetics, including the role of genetic modification in altering the expression of genes in cancerous cells.