Select Committee on Science and Technology Written Evidence


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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