APPENDIX 1
Policies for Genetic Research at Glaxo
Wellcome
The policies of genetic research at Glaxo Wellcome
follow principles outlined by international bodies including the
United Nations' Universal Declaration on the Human Genome and
Human Rights and the Human Genome Organisation's "Principled
Conduct of Genetic Research" and were implemented after consultation
with independent ethics experts:
Ethics Committees or Institutional
Review Boards approve all study protocols and patient consent
forms before any genetic research begins;
participation is entirely voluntary
and does not affect participation in other clinical trials or
the patient's medical treatment;
the patient must give explicit written
informed consent before taking part in any genetic research;
the patient will know how his or
her sample will be used;
patient privacy is protected. The
patient's name and address are not transferred to Glaxo Wellcome,
only a code number is used to identify patients' data;
because of the early stage of Glaxo
Wellcome's research, no results will be provided to anyone (unless
legally required). This includes the patient, his or her family,
employers or insurers;
once the significance of results
has been confirmed, the group results will be published and shared
widely with the medical community in a timely and responsible
manner.
Our genetic research procedures are frequently
reviewed taking into account legislation, recommendations that
are evolving from the science and ethics communities, and the
needs of clinical investigators and patients. For patients participating
in clinical trials of investigational or new medicines, Glaxo
Wellcome has developed patient brochures and a videotape and offers
them to investigators to help explain the genetic research to
patients before they give written informed consent.
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