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BIOETYKA / ETYKA MEDYCZNA - Tematy

Dokumenty międzynarodowe (dostęp do wszystkich 24.02.2019)

UNESCO

  1. International Declaration on Human Genetic Data

https://unesdoc.unesco.org/ark:/48223/pf0000136112

UE

  1. Genetic testing and common disorders in a public health framework

    Recommendations of the European Society of Human Genetics

https://docs.google.com/viewer?url=https%3A%2F%2Fwww.nature.com%2Farticles%2Fejhg2010176.pdf

2.Genetic testing in asymptomatic minors

    Recommendations of the European Society of Human Genetics

https://docs.google.com/viewer?url=https%3A%2F%2Fwww.nature.com%2Farticles%2Fejhg200926.pdf

  1. Whole-genome sequencing in health care

    Recommendations of the European Society of Human Genetics

https://docs.google.com/viewer?url=https%3A%2F%2Fwww.nature.com%2Farticles%2Fejhg201346.pdf

    4.Letter to Members of the European Parliament from the European Society of Human Genetics

https://docs.google.com/viewer?url=https%3A%2F%2Fwww.eshg.org%2Ffileadmin%2Fwww.eshg.org%2FESHGlettertoMEPs.pdf

WHO

1. Guidelines on ethical issues in medical genetics and the provision of genetics services

https://apps.who.int/iris/bitstream/handle/10665/62048/WHO_HDP_GL_ETH_95.1_%28part1%29.pdf?sequence=1&isAllowed=y część 1.

https://apps.who.int/iris/bitstream/handle/10665/62048/WHO_HDP_GL_ETH_95.1_%28part2%29.pdf?sequence=2&isAllowed=y część 2.

2. Summary statement on ethical issues in medical genetics: report of WHO temporary advisers

https://apps.who.int/iris/bitstream/handle/10665/61111/WHO_HDP_GL_ETH.SUM_95.2.pdf?sequence=1&isAllowed=y

3. Proposed international guidelines on ethical issues in medical genetics and genetic services: report of WHO meeting on Ethical Issues in Medical Genetics

https://apps.who.int/iris/bitstream/handle/10665/63910/WHO_HGN_GL_ETH_98.1.pdf?sequence=1&isAllowed=y

4. Statement of WHO Expert Advisory Group on Ethical Issues in Medical Genetics

https://apps.who.int/iris/bitstream/handle/10665/63873/WHO_HGN_ETH_98.2.pdf?sequence=1&isAllowed=y

  1. Review of ethical issues in medical genetics

https://docs.google.com/viewer?url=https%3A%2F%2Fwww.who.int%2Fgenomics%2Fpublications%2Fen%2Fethical_issuesin_medgenetics%2520report.pdf

 

Dokumenty krajowe

Wielka Brytania

  1. Consent and confidentiality in clinical genetic practice: guidance on genetic testing and sharing genetic information

https://www.bsgm.org.uk/media/678746/consent_and_confidentiality_2011.pdf

Australia

  1. Clinical Genetics Services Standards Framework

https://www.hgsa.org.au/documents/item/5909

USA

  1. Ethical and Policy Issues in Genetic Testing and Screening of Children

https://docs.google.com/viewer?url=http%3A%2F%2Fpediatrics.aappublications.org%2Fcontent%2Fpediatrics%2F131%2F3%2F620.full-text.pdf

2. National Academies of Sciences, Engineering, and Medicine. Human genome editing. Science, ethics and governance https://www.nap.edu/read/24623/chapter/10

  1. Enhancing the Oversight of Genetic Tests. Recommendations of the SACGT

https://docs.google.com/viewer?url=https%3A%2F%2Fosp.od.nih.gov%2Fwp-content%2Fuploads%2F2013%2F11%2Foversight_report.pdf

appendix

https://docs.google.com/viewer?url=https%3A%2F%2Fosp.od.nih.gov%2Fwp-content%2Fuploads%2F2014%2F01%2FappendixA_0.pdf

  1. Ethical and Practical Guidelines for Reporting Genetic Research. Results To Study Participants: Updated Guidelines from an NHLBI Working Group

https://docs.google.com/viewer?url=https%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpmc%2Farticles%2FPMC3090664%2Fpdf%2Fnihms272954.pdf

  1. Clinical utility of genetic and genomic services: a position statement of the American College of Medical Genetics and Genomics

https://www.nature.com/articles/gim201541.pdf

Japonia

  1. Guidelines for Genetic Tests and Diagnoses in Medical Practice . The Japanese Association of Medical Sciences

http://jams.med.or.jp/guideline/genetics-diagnosis_e.pdf

  1. Guidelines for genetic testing

http://jshg.jp/wp-content/uploads/2017/08/10academies_e.pdf

  1. Fundamental principles of research of human genome. Council for Science and Technology, Bioethics Committee

http://www.mext.go.jp/b_menu/shingi/kagaku/rinri/pri00614.htm

Kanada

  1. Joint Statement on the Process of Informed Consent for Genetic Research

https://docs.google.com/viewer?url=https%3A%2F%2Fwww.cagc-accg.ca%2Fdoc%2Fcagc-ccmg%2520joint%2520staement%2520on%2520the%2520process%2520of%2520informed%2520consent%2520for%2520research%2520final%2520nove%252027%25202009%2520vers%25201_0.pdf

 

Inne

  1. Research Ethics Recommendations for Whole-Genome Research: Consensus Statement

https://journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.0060073

  1. Genetic testing and genetic research. A report by bioethics advisory committee Singapore

http://www.bioethics-singapore.org/images/uploadfile/55211%20PMGT%20Research.pdf