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Briefing Note: Nuffield Council on Bioethics: Ethical challenges in bioscience and health policy for the UK Parliament

 

This briefing document sets out four key ethical challenges in bioscience and health policy for the UK Parliament and suggests how these challenges can be addressed.

Four challenges, explored in greater detail in this document, include:

 

  1. Build and maintain trust in medical research and the life sciences

  2. Ensure research and innovation address the needs of society

  3. Promote responsible health policy and research

  4. Promote international leadership in bioethics

 

These challenges draw on current and previous projects including their work on genome editing, cosmetic procedures, non-invasive prenatal testing, biological and health data, the culture of scientific research, children and clinical research, donor conception, emerging biotechnologies, mitochondrial DNA disorders, solidarity, naturalness, organ donation, biofuels, personalised healthcare, dementia, public health and forensic bioinformation.

 

The briefing document, along with short summaries of the Council’s recent reports, policy briefing papers and responses to policy consultations are available here.

 

 

 

 

 



NEW BOOK: D. Jones, C. Gastmans, C. MacKellar (Eds.) Euthanasia and Assisted Suicide: Lessons from Belgium. Cambridge University Press. 2017

 

 

 

Euthanasia in Belgium – one of the only five countries where euthanasia is practiced legally – is the subject of a large body of empirical research. However, until the present volume no study has sought to draw this research together into a coherent narrative and present it to an English-speaking readership. The book includes fourteen contributions from academics and clinicians in Belgium and six from international academics. Looking at the implications of legalized euthanasia and assisted suicide from an international and interdisciplinary perspective, this panel of experts has written an in-depth analysis of the ethical aspects of this complex area, appealing to law, philosophy and medical disciplines. The discussion forms a foundation for informed debate about assisted dying and provides a useful guide to similar choices faced by other jurisdictions.

 

 

 

Click here for more information

 



PET Report: Basic Understanding of Genome Editing

 

The Progress Educational Trust has just published their report entitled Basic Understanding of Genome Editing. The report summarises the findings of a project they carried out with their fellow charity Genetic Alliance UK, funded by the Wellcome Trust. The project explored what patients and laypeople think and know about genome editing and its implications, and developed recommendations for how best to discuss genome editing in public.

Click here

 



2018 National Student Debate Competition

Topic: Pre-natal and pre-conception genetic screening will lead to a better society.

Deadline for uploading videos: Monday 11 December 2017.

Final to take place Saturday 17 March 2018. Venue tbc.

 

2018 Student Debate Competition - Student information sheet



Call for Abstracts - ICCEC 2018

The Organising Committee of the 14th International Conference on Clinical Ethics Consultation (ICCEC) invites you to submit abstracts that address the conference main theme or any of the sub-themes.

Abstract Guidelines

1. General Conditions

  • The deadline to submit abstracts is Friday 15th December. Abstracts received after this date will not be accepted.
  • Only abstracts submitted in English will be reviewed.
  • Abstracts should be original work that has not been previously submitted for publication or presented at another conference
  • A maximum of two (2) abstracts may be submitted per presenting author (including symposium presenters).
  • Abstracts must not exceed the word limit stated below for the respective presentation type.
  • All abbreviations must be spelled out on first use.
  • To be formally accepted, the presenter (or all presenters for a symposium) must be registered and have paid to attend ICCEC 2018 by 31st March 2018

2. Abstract Themes

Each submission should be classified into one of the following themes: Within these themes the committee will consider a broad range of content. We have provided some examples of areas that might fit within each theme for general guidance only –we encourage you to submit abstracts outside of these examples.

A. Ethical challenges in the clinic: impetus for research and learning

Example

  1. Innovation at the boundary of treatment and research What counts as innovation, and which ethical models and values should apply.
  2. Rationing in clinical practice. How resource limitations influence practice and the ethical implications of different coping

 

B.Theoretical foundations and conceptual frameworks

Example

  1. Different models of CES arising from different philosophical positions and traditions
  2. (How) can ethical theory improve CESS? Is theoretical knowledge a prerequisitefor quality in CESS?


C. Empirical ethics emerging from and informing practice

 

Example

    1. i.Evaluation of CES
    2. ii.Research on ethical challenges in specific clinical areas
    3. iii.Does clinical ethics mitigate moral distress?


D. Translating across global contexts

Example

  1. Can/should curriculums and models of CES be transferred to different global settings and cultures?
  2. Medical research in low income settings creating clinical ethical dilemmas?
  3. Does autonomy engender bioethical imperialism?

E. Translating to advocacy and policy

Example

    1. Developing/influencing policy on treatment of asylum seekers and other migrants
    2. The role of clinical ethics in national policy debates eg Physician Assisted Suicide, Organ transplantation, use of gene therapy

 

3. Types of Presentation

The preferred mode of presentation can be selected during abstract submission. The final mode of presentation for the accepted abstracts will be determined by the Scientific Committee.

Oral Presentations and case studies

  • Presenters will be allocated 20 minutes to present and engage in discussion
  • Abstract Word limit: 300 words

Case studies

  • Presenters will be allocated 30 minutes to present and engage in discussion
  • Abstract Word limit: 300 words

Symposium

  • Presenters will be allocated 1 hour for a panel discussion
  • Up to 4 panellists, in addition to the Chair, are permitted for the symposium.
  • Abstract Word limit: 500 words (inclusive of a summary of each panellist’s topic)

Poster Presentation

  • There will be a dedicated area and timeslot for poster presentations and interactions with delegates
  • Abstract Word limit: 300 words

Registration for Abstract Submission

 

When following the link to submit an abstract you will be re-directed to a site that is Institute of Medical Ethics branded.  If you have not used this site previously you will be required to register before being able to enter an abstract.  One you have registered you will be able to log back in to add more to your abstract and/or edit existing content up until the point where you click to submit.

IMPORTANT – When submitting an abstract please start the title with the letter associated with the theme that you are submitting under ie:
A – Ethical challenges in the clinic: impetus for research and learning
B – Theoretical foundations and conceptual frameworks
C – Empirical ethics emerging from and informing practice
D – Translating across global contexts
E – Translating to advocacy and policy

 

Please have the following details of the Author and Co-Authors ready for the abstract submission

  1. First Name
  2. Last Name
  3. Country
  4. Institution/ Organisation
  5. Profession

Abstract Receipt Confirmation

Upon successful submission, the main author will receive an automated acknowledgement via email.  No further action is required. 

Following the conference accepted abstracts will be published in the Journal of Hospital Ethics with the authors consent.

Important Dates

Important dates

Closing of abstract submissions

Friday 15th December 2017

Notification of acceptance

Friday 23rd February 2018

Confirmation of acceptance

Friday 9th March 2018

Launch of early bird registration rate

Friday 5th January 2018

Deadline for bursary applications

Friday 23rd February 2018

Deadline for early bird registration rate

Friday 20th April 2018

Deadline for standard registration rate

Friday 15th June 2018



IME Elective Bursaries: Transitional round of bursaries to be awarded for 2018

DEADLINE EXTENDED!

Closing date extended to: 00.59 pm Sunday 22 October 2017

Students to be informed of outcome by: Tuesday 5 December 2017

This is for elective bursaries to be awarded for 2018.

The latest application form and guidelines for this round are available on the awards page of the website, along with an additional document entitled Research methods in medical ethics - IME guidance for Elective Bursary Projects which we would encourage applicants to read. Please use only these documents for this round.

(Please note: If you are already in receipt of an IME bursary, this notice does not apply to you.)



Speaker slides & delegate handbook now available to view: Ethics Education after Medical School 5 June 2017, St Catherine's College, Oxford

Click on Resource centre to view.



Undergraduate conference report by IME grant recipient, Simrit Kudhail

KUDHAIL Image_presentationSimrit is a 4th year student at University of Birmingham who was awarded IME funding to enable him to attend & present at the UNESCO 12th World Conference in Bioethics on 21-23 March in Limassol, Cyprus

The UNESCO Bioethics conference was established to provide academics and healthcare professionals from a wide range of fields with a forum to discuss prevalent and emergent issues of bioethics, healthcare ethics and medical law. Conference attendees represented many different countries and professions, allowing cross-disciplinary and cross-cultural presentations and discussions of these issues, with the aims of raising awareness and presenting novel ideas or possible solutions to a range of ethical issues.

I attended the conference to present the research I conducted during my Healthcare Ethics and Law intercalation year at the University of Birmingham, in which I discussed whether religious patients should be considered autonomous in their decision-making. I hoped that by discussing my research with experts in the field, I would gain a valuable insight into the strengths and limitations of my work, allowing me to develop it further before aiming for a publication. I also hoped to hear others' research on autonomy and see whether my notions of autonomy were similar that of the other presenters, and also whether my research was applicable to their presentations. In this report I reflect on the presentations concerning patients' autonomy and their implications on my own research.

My main area of reflection concerned the difference in the use of autonomy between myself and the other presenters; where my research intended to provide a theoretical revision of autonomy as a rational concept, others' presentations concerned autonomy as a practical principle that all patients ought to have. One such presentation by a Sudanese doctor discussed the rights of adolescents in decision-making in Sudan (Ebtihal Eltyeb, Saudi Arabia). Her presentation eluded to the use of something similar to Gillick-Fraser competence, but it was interesting to hear her attempts to establish a criteria by which adolescents could be given the right to their own healthcare decisions whilst also managing complex cultural traditions (for example examination by doctors of the opposite sex). Another presentation by a British academic discussed the use of a new toolkit (the Mental Capacity Assessment Support Tool, M Jayes, University of Sheffield) which allows healthcare professionals to ensure patients have the capacity to make their decisions. Once again this used autonomy as a practical principle, using Beauchamp and Childress' concept of autonomy as freedom from external influence, achievable through capacity and informed consent.

In this respect, my research was significantly different. I felt a to think theoretically to determine if religious and cultural beliefs were philosophically compatible with autonomy by critiquing whether philosophical accounts of autonomy allowed external influences on decision-making. To do this, I had to move away from the use of autonomy as freedom from external influence, as religion and cultural traditions are themselves external influences. All of these accounts suggested autonomy needed some rational aspect in the decision-making process, whether it is hierarchical desires, coherence with other beliefs, or normative competency. Therefore my research concluded that theoretically, religious or cultural beliefs that have undergone some rational critique can be considered autonomous – a process which I called rational consideration. Thus my presentation was theoretical instead of practical, and concerned autonomy itself rather than the practicalities of decision-making.

The difference in definition was made clear after my presentation, as the first questioner asked "but is autonomy actually rational?" To me, this made it clear that many people do not see autonomy as a property in its philosophical sense, and instead use the word autonomy as a synonym for the patient's own choice which does not necessarily involve a rational component. Thus my reply to the question had to make it clear that I felt our current view of autonomy has moved too far from its philosophical origin, as autonomy is necessarily rational, and I therefore felt non-rational decision-making cannot be considered autonomous. Replying to this question sensitively was one of the hardest aspects of the presentation, and this stressed the importance of making this ethical distinction clearer in my development of this research.

Alongside talks on autonomy, I also attended the sessions run on medical ethics education, disaster ethics, and ethical implications of end of life treatment. One of these presentations - 'Mediating Religious Objections to End-Of-Life Care' (Kartina Choong, University of Central Lancashire) - explored the use of mediation between families and medics as a way to overcome possible conflicts between the religious beliefs of the patient or the patient's family and the medical team. Interestingly this research reached a similar conclusion to my own, in suggesting accepting dissent of treatment on the grounds of their perceptions of their religious belief is not necessarily the right option. Instead, the process of mediation allows the medical team and the patient's family to explore the beliefs in question, and discuss the best outcomes for the patient. This process is in essence similar to the process of rational consideration which I suggested was necessary to ensure decision-making based on religious influence can be considered autonomous; the difference being that the rational process in Choong's research is done by a group on behalf of an individual, whereas rational consideration as I described it is done by the individual themselves.

Whilst this report focuses on autonomy and religious belief, it was inspiring to see a wide range of people discussing a variety of topics concerning medical ethics. Attending a conference with the primary aim of exploring issues in bioethics, healthcare ethics and law across the world has made it clear that medical ethics is incredibly relevant in today's society, and it is becoming more significant globally Yet the cultural diversity we see means that one solution for a given problem isn't always possible, and cultural beliefs and practices affect the ethical issues we will face. Thus it is important we discuss these issues globally in an attempt to find the best solutions possible at that time, and plan for future developments in medical ethics.



Postgraduate conference report by IME grant recipient, Helen Smith

Helen is a PhD student, University of Bristol, who was awarded IME funding to enable her to attend CEPE/ETHICOMP 2017: Values in Emerging Science & Technology on 5-8 June in Turin, Italy

Ethicomp is a series of conferences which consider computer ethics conceived broadly to include philosophical, professional, and practical aspects. It has held conferences since 1995 in Europe and Asia. CEPE (Computer Ethics and Philosophical Enquiry) has been running since 1997 and is more narrowly focussed on the philosophical aspects of computer and information ethics. The CEPE/Ethicomp 2017 was the third joint event which they have held, this time kindly hosted by the Department of Law at the University of Turin, Italy, from 5-8 June 2017.

Around 100 delegates attended; I met professionals, students and academics from Europe, Asia, Australia and North America. The interdisciplinary ethos meant that there were contributions brought from a variety of sectors such as computer scientists, policy makers, lawyers, ethicists, philosophers, social scientists, gaming as well as health technology. The warm, friendly and supportive attitude within the attending community encouraged space for constructive feedback after presentation of each contributor's paper.

Those presentations which were specifically relevant to the medical ethics community included:

Katleen Gabriel's presentation "Between 'Entertainment Medicine' and Professionalization of Healthcare: An Interview Study of Belgian Doctors" identified the rise in enhanced selfcare utilising new technology e.g. blood pressure monitoring, blood sugar monitoring. Her study asked Belgian GPs and Cardiologists how they'd felt about the rise of the use of digital tracking. Patients wanted more dialogue with their doctors and did not wish for the technology to surpass their physician's expertise. Unreliable tech had made one cardiologist angry as it was taking his time away from people who had genuine needs. Drs did not feel that they were losing their authority to tech, but were afraid of the data overload and loss of context. Overall, with data gathered, one can have a clear and more accurate conversation with patients. But the time saved will probably get used to see extra patients rather than spending more time with the individual patient.

Frances Shaw's presentation of "Ethics in the design, research, and evaluation of mHealth and eHealth solutions for mental health: a qualitative study of a research institute" reported on the ethical development she has been doing for the Socialize App (a smartphone app which associates changes in social networks over days/weeks may indicate mental health problems developing) which is in early prototyping. There is concern for the maintenance of privacy as GPS data discloses the home and workplace of individuals and that this data creation is passive and opposite to the act of active and willing disclosure of illness; that disclosure is made on behalf of the individual rather than by the individual which interferes with the person's agency. She identified that Big Data is shaping our state of being and that we should anticipate the development and then theorise the ethics before application rather. For example; there is no identification of the responsibility of initiating the intervention for the person who has been identified as being at risk of being mentally unwell- who should respond once the app has raised the alarm?

David Krep's and Oliver Burmeister's presentation of "I am a Person" spoke of how we are both radically contingent and unique, that in age related cognitive decline the physical motor accompaniment to our mental and emotional lives begins to deteriorate. Value Sensitive Design (VSD) seeks to explicitly support human values in assistive technologies. Through this, power can be identified in an intentional way which will help with the realisation of a society in which technology is a force for empowerment rather than for domination.

I would like to take this opportunity to thank the Institute of Medical Ethics for making it possible for me to attend this event.