bioethics

The Nuffield Council on Bioethics has issued an open call for evidence to inform its examination of ethical issues arising in relation to genome editing. “Submission of evidence” is defined broadly, and includes opinions, reflections, and suggestions. No flames or trolls though, obviously.

The deadline to respond is Monday, 2/1, it’s recommended that it’s roughly 2000 words if submitted in writing, and it needs to be accompanied by this form: http://nuffieldbioethics.org/wp-content/uploads/NCOB_GenomeEditing_response-form.docx.

The Council has posed a number of questions pertaining to human biomedical applications. The Center for Genetics and Society is composing a response and has shared with me this distilled guide to the Council’s questions. If any of you are inclined to make your voice heard on one of the most prominent biotechnical issues today, I encourage you to use this guide in drafting your own submission.

General Questions:

• Information: references, especially recent or unpublished information & current or planned research or applications; other sources of information that we should consult?
• Opinion: What are the rates and direction of travel, likely applications and timescales? What is on the scientific horizon and what is (currently) science fiction?
• Insight:
  • What are the relevant perspectives and the issues they foreground?
  • Are any perspectives unfairly marginalised?
  • How are different actions and outcomes valued, and on what basis?
  • Using what frames of reference and systems of values might we understand and respond to genome editing?
• Evaluation:
  • What are the potential benefits and to whom do those benefits accrue?
  • What are the potential risks and adverse effects, and how are those risks and effects likely to be distributed?
  • How are we to identify and evaluate the scale and significance of those benefits and risks in relation to each other?

Specific Questions:

CRISPR & the Genome: the BioTechnological Continuum

• Is CRISPR transformative or disruptive of the field of genetic engineering? Is it continuous? Should it be treated separately? What is its distinctive significance?
• Is the Human Genome categorically different or special in ways that make intervening into it different from other ways of manipulating nature (e.g. selective breeding of plants, animals)?

Duties Owed & Rights

• What obligations do scientists developing genome editing technologies owe to society?
• What freedoms does/should society owe/allow to scientists?
• What obligations do governments owe to society to ensure “safe” science or shape R+D?

Morality

• What conventional moral principles does genome editing challenge?
• What moral or legal frameworks are necessary or desirable to ensure adherence to moral principles?
• What are the issues of greatest moral concern raised by genome editing?

Justice & Access

• What is the proper context in which to evaluate the pursuit of high tech strategies and high ambition clinical objectives in relation to possible alternatives and opportunity costs?
• Are the benefits and costs of treatment likely to be distributed equitably? How would genome editing differentially affect vulnerable or marginalised groups?

Evaluation Frameworks

• Biomedical Apps at Issue: Germline Intervention, Gene Therapy & Xenotransplantation
• In translating research into treatment, does genome editing raise any special considerations (such as: assessment, risk management, who should assess safety and accessibility)?
• In setting policy for research and applications, who should lead and who should be involved? Different than other experimental or reproductive biomedicines?
• What are the significant decisions that need to be taken before therapeutic use of (somatic or germline) genome editing may be contemplated and who should have the responsibility for those decisions?
• Who is framing the global debate and what is the importance attached to global consensus?