NUFFIELD COUNCIL PUBLISHES

SUPPLEMENT TO REPORT ON GENETIC

SCREENING
17/8/06. BY THE PUBLIC HEALTH GENETICS UNIT

The Nuffield Council on Bioethics has published a major

supplement to the 1993 report 'Genetic Screening:
ethical issues'.

The supplement was produced by a Working Group established to review the and update the
original report on genetic screening [PDF 750KB] in the light of the various scientific,
technological and policy-related developments over recent years, although it was concluded
that the ethical analysis of the report was still relevant in its original form.
In addition to scientific, clinical and technological advances, key developments over the last
13 years include the general growth in the provision of genetics services both nationally and
internationally; the Government's 2003 Genetics White Paper and the impact it has had on
the NHS; and the establishment of the UK National Screening Committee and the Human
Genetics Commission.
News: UK Government publishes White Paper on Genetics in the NHS (26/06/03)
Background: Human Genetics Commission
With respect to genetic screening, most of the growth in recent years is noted to have been
via the expansion of restricted or pilot screening programmes, as opposed to the introduction
of completely new schemes.
The inherent difficulty of developing tests for genetic susceptibility to common complex
diseases such as coronary heart disease and diabetes (that have multiple contributory genetic
and environmental factors) is noted; and although the possibility that such tests may
eventually become available exists, the supplement concludes that this is not likely within the
next few years and that "the potential of screening to improve health should not be
exaggerated, since this could lead to false assumptions and unnecessary anxiety".
Consent to participation in a genetic screening programme is considered, along with the
question of whether (and when) suitable genetic counselling should be offered. It is
recommended that counselling should be "concentrated on those conditions that threaten life
or have a serious impact on the ability to live life fully", with concern being raised that
excessive obligations with respect to consent and counselling could hamper the introduction
and maintenance of screening programmes.
The supplement also endorses the continuation of the current moratorium restricting the use
of genetic test results by insurance companies in the UK.
Both the supplement and the 1993 report are available from the Nuffield Council on Bioethics
website.
Adapted from a news release by the Public Health Genetics Unit.
 JOINT COMMITTEE GUIDANCE ON
CONSENT AND CONFIDENTIALITY IN
GENETIC PRACTICE
28/06/06. BY THE PUBLIC HEALTH GENETICS UNIT

The Joint Committee on Medical Genetics has published

a report, Consent and confidentiality in genetic
practice: guidance on genetic testing and sharing
genetic information.
The Joint Committee on Medical Genetics, whose parent bodies are the Royal College of
Physicians, the British Society of Human Genetics and the Royal College of Pathologists, has
said the report "…is a response to requests from genetics professionals for clarification of
issues of consent and confidentiality in clinical practice, particularly with regard to the
requirements of the Data Protection Act 1998 and the Human Tissue Act 2004."
The draft report was made available for consultation in 2003, but its publication was delayed
until 2006 in order to take into account issues arising from the Human Tissue Act 2004 and
the Human Tissue (Scotland) Bill.
The report provides information, advice and guidance on the general aspects of consent in
medical genetic practice; the giving and sharing of genetic information; genetic investigations
on stored samples or archival pathological material; consent and DNA analysis under the
Human Tissue Act 2004; and the Data Protection Act 1998 and the processing of medical
genetic information. It also contains detailed flowcharts summarising the recommendations
for clinical practice. Specifically, the flowcharts cover requesting information and samples
during a genetic consultation; sharing and disclosing genetic information; and consent for
genetic analysis of stored samples or archival pathological material.
The Joint Committee recognises that the report will not answer all questions. However, in his
cover letter to the report, Dr John Crolla, Chairman of the Joint Committee, notes that they
hope "…it will provide a framework which in time will lead to a consistency of approach in this
difficult area for all of the UK's clinical and laboratory genetics services and in those other
areas of medicine and pathology for which genetic technology and information is becoming an
increasingly important feature of clinical practice."
As the contents of the report are time-sensitive, with the implementation of the Human
Tissue Act 2004 scheduled for September 2006 and the Human Tissue (Scotland) Act 2006
[PDF 216KB] receiving Royal Assent, the aim is to revisit and revise the guidance after two
years.