The UK Human Genetics Commission

John Sulston

- 18th November 2005 -

What is the Human Genetics Commission?

• Formed in 1999 after UK biotechnology regulatory review and began a second term in January 2003

• Provides government with advice on the “big picture” on human genetics - in particular the ethical, legal and social implications of advances

• Members all appointed by open advertisement to reflect diverse viewpoints

• Works in public and aims to involve public at all stages of its work

Who is on the Commission?

• Chaired by Baroness Helena Kennedy QC. Vice-chair Sir John Sulston

• ½ Science - clinical, research and commercial genetics

• ½ “Lay” - law, ethics, consumer, sociology and disability rights

• Representatives of the CMOs of England, Scotland, Wales and Northern Ireland and from HFEA

What is the Commission’s remit?

• Analysis of developments in human genetics including: - impact on human health and healthcare - social, ethical, legal and economic implications

• Informing and consulting the public

• Promoting dialogue and collaboration

• Horizon scanning

• Advising on strategic priorities for research

The National DNA Database

- holds DNA profiles from those arrested for (from 2004*), charged with, informed they will be reported for, or convicted of a recordable offence. Also holds DNA profiles obtained from crime scenes.

- managed and operated on behalf of the police by the Forensic Science Service

- became operational:- from April 1995 in England and Wales- from December 1996 throughout the UK

* effective from 5 April 2004 under Criminal Justice Act 2003

How does the Database assist in the investigation of crime?

The Association of Chief Police Officers identifies six benefits:

- early identification of linked cases (serial crimes)

- early arrest of offenders

- valuable intelligence

- early exoneration of innocent suspects

- easier identification of bodies

- deterrence

What are the police powers to take samples?

The Criminal Justice & Public Order Act 1994 (CJ&PO) amended the Police & Criminal Evidence Act 1984 (PACE), and made possible the operation of an effective National DNA Database. The police may:

– Take a non-intimate sample without consent from all persons who have either been arrested for, charged with, informed they will be reported for or convicted of a recordable offence.

– Retain DNA samples (and profiles) taken on suspicion of involvement in a recordable offence (came into force on 11 May 2001 with retrospective effect on samples already in the system)

– Retain and use DNA (and profiles) given voluntarily for the purposes of elimination – where the individual gives written consent.

– Cross-check DNA profiles against records held by those listed in section 63A(1A) of PACE (for example foreign police forces, the Ministry of Defence and the Armed Forces police forces).

What kind of samples are taken?Can a person refuse?

Intimate Samples (Section 62 of PACE)

An intimate sample consists of a sample of blood, semen or any other tissue fluid, urine or pubic hair, a dental impression, or a swab taken from a person’s body orifice other than the mouth.

Consent is always sought for an intimate sample, but one can be taken on the authority of an Inspector from a person in police detention if there are reasonable grounds for suspecting the involvement of the person in a recordable offence and for believing the sample will tend to confirm or disprove his/her involvement.

An intimate sample may also be taken from a person not in police detention when at least two non-intimate samples have been taken which have proved unsuitable or insufficient.

Non-Intimate Samples (Section 63 of PACE)

Mouth swabs and hair samples can be taken, without consent, from:

- a person in police detention or a person being held in custody on the authority of an officer of at least the rank of Inspector if there are reasonable grounds for suspecting the involvement of that person in a recordable offence and for believing that the sample will tend to confirm or disprove his/her involvement

- any person arrested for, charged with, informed they will be reported for, or convicted of a recordable offence, regardless of whether the sample is relevant to the investigation of a particular offence

How many samples, how successful?

- the Database now holds ~ 3.24 million* DNA profiles taken from suspected offenders (includes some duplicate profiles), plus more than 252,556* DNA profiles from crime scene samples

- approximately 750 DNA matches are made per week: i.e. there are 750 crime scenes which produce a DNA match for the first time where one or more subjects are identified (matches relate to detectable crimes)

- crime scene to subject match rate is ~ 46%, and rising

- 328 intelligence led screens, in which a total of 87,237 samples were taken resulting in 294 matches

(*as of end August 2005)

The Human Genetic Commission andthe National DNA Database

June 2001 HGC visited the Forensic Science Service to learn about the organisation and management of sampling, profiling and the National DNA Database.

May 2002 HGC published “Inside Information – Balancing interests in the use of personal genetic data”, which contained the following recommendations:

“We recommend that, at the very least, the Home Office and ACPO establish an independent body, which would include lay membership, to have oversight over the work of the National DNA Database custodian and the profile suppliers … (and that) … in the short term the Home Office and FSS introduce an independent research ethics committee, to approve such research.”

The National DNA Database Board then invited an HGC member to sit on the Board

February 2005 HGC submitted written evidence to the Science and Technology Committee, repeating the recommendations in ‘Inside Information’. Pointed out that :

- there is still no independent body (with lay membership) to oversee the work of the custodian of the database. Neither is there is an ethics structure in place to properly assess research proposals submitted to the National DNA Database Board.

- the presence of an HGC member on the Board, while helpful, does not provide adequate consideration of the ethical issues involved in research proposals.

- the HGC is concerned about the nature of research proposals, specifically around what constitutes 'research'. Requests to carry out internal development, for example to develop familial testing, are more frequently received by the Board. This kind of work could be regarded as research and previously went ahead without ethical review.

Developments over the past twelve months.

- HGC gave evidence to the Science and Technology Committee

- Baroness Kennedy wrote to the new Chair of the National DNA Database Board, Chief Constable Tony Lake, asking him to take on board the recommendations in ‘Inside Information’, relating to the database.

- HGC chaired a meeting with the Chair of the NDNAD Board, with the Association of Chief Police Officers, the Custodian of the database, COREC and officials from the Home Office. Aims:-

- increased lay membership on the Board- separate ethics committee for R&D

- HGC contributed to the Scottish Executive’s consultation of police use and retention of DNA samples and fingerprints in Scotland. Continues to make the case for the law in this area to be unified across the UK so that, in England and Wales, consent can be withdrawn by volunteers of samples, as it can in Scotland.