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Standard operating procedure
Genetic Counselling No: 014D
Genetic counselling is a communication process which deals with
the human problems associated with the occurrence, or risk of
occurrence, of a genetic disorder in a family. Genetic counselling
is presumptive identification of an unrecognised genotype in
individuals or populations.
screening is usually divided into three parts: (1) to detect
the presence of disease, (2) to provide reproductive information,
and (3) to gain information concerning the incidence of a disorder
in the population. For the purposes of this study (1) and (3)
will be required.
of counselling is measured by the way in which the family uses
the information presented to them.
Research nurses trained in the method are responsible for counselling
families. It is the responsibility of the Nurse Co-ordinator
to ensure that all research nurses are familiar with the requirements
of Genetic counselling.
aims to look at the inherited cause of High Blood Pressure by
identifying 5 responsible genes. No genetic information will
be provided to subjects or their GP's. All subject data will
possess a unique ID code which will not be traced back to the
subjects involved. This particular study will not need to address
the issue of Antenatal screening.
of genetic counselling for this study, is to provide subjects
with enough information so that they understand our aims and
the importance of their family medical history. This will hopefully
provide the project with sufficient information, such that the
genes responsible for hypertension in a white European population
can be identified.
counselling subjects it is best to find an opportunity where
time is not critical to those involved. Counselling can be
provided anywhere, over the telephone, at a GP surgery or
at the subject's home.
- The object
of successful genetic counselling is to clearly explain the
nature and purposes of the study procedures, in a manner they
of Genetic data is not mandatory and for the purposes of this
study all subject data will be coded. Identifying genetic
details back to individual subjects will not be possible.
All data results will remain confidential, under the Data
- To comply
with the ethical constraints of the study, no subject will
ever know their genetic results. This ensures that the subject
will not come across any insurance complications as a result
of donating blood for a genetics study.
- All subjects
must sign a consent form before donating their blood for the
study. No subject should donate blood unless they have been
fully informed of the study.
- The purpose
of genetic counselling in this study is to ensure that all
subjects are fully aware of what is required of them. They
should be able to feel comfortable in asking any questions
they require. The answers should be provided in a manner and
style that they can understand.
- All subjects
entering the study do so voluntarily and should not be put
off by the nurse suggesting that they are going to counsel
them. Genetic counselling for this study is a method of monitoring
hypertensive subjects in the UK, to detect the possible genes
predisposing to this condition.
when screening subjects for one study, unexpected results
for something else may arise (e.g. high cholesterol). All
results (with the exception of genetic details) will be provided
to every subject's GP. It is then the responsibility of the
GP to discuss any significant results with their patients.
subject will have different counselling demands.
Counselling requirements are based on the information provided
by the subject to the nurse, regarding their family medical
history. A careful, detailed family history is necessary to
the counselling process.
nurse taking family histories must allow a liberal amount
of time both for data collection and counselling needs. The
family history should be recorded in the form of a family
tree (pedigree chart). See SOP 015 for more detail.
- The success
of counselling is measured by the way in which the family
uses the information presented to them.
- The objective
for genetic counselling for this study is purely for health
rather than inheritance.
Council on Bioethics. 1996. Genetic Screening. Ethical Issues.