The Parliamentary Joint Select Committee publishes its report on the Human Tissue and Embryos (Draft) Bill

The Parliamentary Joint Select Committee published its report on the Human Tissue and Embryos (Draft) Bill on 1 August 2007. In nine working weeks, (curtailed by the end of the Parliamentary session), the Committee has gathered an impressive array of evidence, engaged in novel methods of public engagement, and has produced a thoughtful and balanced report. It seems appropriate that the opening chapters of the report deal with the central place of public opinion, and value of ethical deliberation. The report notes that whilst a variety of witnesses claimed that their views reflected public opinion ‘responses to public consultations often come from those with strong views which may not be representative of those held by the general public’ and the views expressed are by their nature self-selecting. As a consequence, independent public policy research, commissioned by Government is needed, as is a more active approach by the Government and the regulator to improve and inform public understanding. 

Given the plurality of the deeply held views expressed to the Committee, establishing an ethical framework is not straightforward. This role, the Committee argues, falls to Parliament, and they call for the establishment of a joint bioethics committee of both Houses of Parliament to provide ethical input to legislation, such as the Human Tissue and Embryos (Draft) Bill which raises significant issues in bioethics.

Regulatory architecture

Turning specifically to the draft Bill, they challenge the prescriptive regulatory architecture within the Bill which provides for a limited set of regulatory options. Instead they advocate a clear framework based on the principle of devolved regulation, establishing criteria for permitted regulation. Significantly, they dismiss plans to merge the HFEA and HTA on the basis that ‘evidence against establishing RATE [was] overwhelming and convincing’ and judge that oversight provided by the two existing regulatory authorities is better given the distinctive remit of both authorities: the HTA being concerned with the policing of consent and the HFEA with the complex moral and ethical issues surrounding the use of embryos. 

Reforming the Human Tissue legislation

Despite representations that it was premature to consider reforming the recently enacted human tissue legislation, the Committee were persuaded that amendments to the Human Tissue Act (2004) may be necessary, particularly to amend the status of post-mortem tissue samples so that they are held as part of the medical record (as provided by the Human Tissue (Scotland) Act 2006). They were also persuaded that it is sometimes appropriate for samples collected after sudden infant death, to be retained rather than to be destroyed. They also acknowledge that the draft Bill may be an opportunity to review operational problems that have arisen in respect of surgically retained tissue from the living, and storage licences for research.

Inter-species embryos

Inter-species embryos is cited as ‘one of the most contentious issues in our inquiry and one in which many witnesses had opposing, deeply-held views’. The Committee criticised the attempt to apply a catch all definition, described by some witnesses as unintelligible and unworkable, branding the Government’s approach as ‘misguided and rest[ing] on no sound point of principle’. Instead if endorsed by Parliament on a free vote, the Committee advocates that the HFEA should decide which entities should be created, kept and used for research under licence, on a case by case basis, They go on to dismiss definitions for an inter-species embryo based upon a quantification of animal genes within an embryo, and instead offer a revised working definition – 

An inter-species embryo is an embryo which–

(a)    contains genetic material of human and animal origin, and

(b)   in which the genetic material of human origin consists of at least a complete set of haploid set of human chromosomes in one or more cells.

Ethical issues around fertility

The Committee argues that the State’s role in assisted conception implies a moral duty not to be party to a deliberate deception about a person’s genetic history. They urge the Government to consider in more detail the argument that donor conception should be registered on a person’s birth certificate. 

Genetic registers

Given that 40% of children are born to unmarried couples, the Committee proposes extending access to registers of genetic relatedness to all prospective cohabitees, subject to consent from any prospective partner.

Saviour siblings, sex selection and the need for a father

In some respects, the regulatory hurdles imposed by the Bill are judged by the Committee as being too harsh. An example is the provision allowing the treatment of life–threatening conditions using umbilical cord blood stem cells from a saviour sibling. Instead, the Committee argue that the treatment of serious conditions should be sufficient justification. In other ways, the report suggests, the ethical framework adopted by the Bill is too lax: examples include allowing sex selection for reasons connected with the health of the child, rather than prohibiting sex selection for non-medical reasons, (the existing position, advocated by the Committee). Another example is the proposal to remove the ‘need for a father’ provision. Instead the balance of opinion from the Committee is that the provision be retained in an amended form which allows for interpretation as a ‘need for a second parent’. Again the recommendation is that the issue should be put to a free vote in both Houses.

Sperm sorting kits, surrogacy and internet sperm sorting

Some regulatory proposals were viewed as being unenforceable such as the criminal offence for advertising or supplying sperm sorting kits; but the draft legislation should be amended to include the regulation of surrogacy and provide for licensing of internet sperm donation, the Committee argue. 

The Government is expected to publish a response to these proposals after the end of the Parliamentary recess on 8 October.