Disclosure of individual genetic data to research participants: the debate reconsidered

AL Bredenoord, HY Kroes, E Cuppen, M Parker… - Trends in Genetics, 2011 - cell.com
Despite extensive debate, there is no consensus on whether individual genetic data should
be disclosed to research participants. The emergence of whole-genome sequencing …

The uneasy ethical and legal underpinnings of large-scale genomic biobanks

HT Greely - Annu. Rev. Genomics Hum. Genet., 2007 - annualreviews.org
Large-scale genomic databases are becoming increasingly common. These databases, and
the underlying biobanks, pose several substantial legal and ethical problems. Neither the …

European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions

SD Mentzelopoulos, K Couper, P Van de Voorde… - Resuscitation, 2021 - Elsevier
Abstract These European Resuscitation Council Ethics guidelines provide evidence-based
recommendations for the ethical, routine practice of resuscitation and end-of-life care of …

Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working …

RR Fabsitz, A McGuire, RR Sharp… - Circulation …, 2010 - Am Heart Assoc
In January 2009, the National Heart, Lung, and Blood Institute convened a 28-member
multidisciplinary Working Group to update the recommendations of a 2004 National Heart …

Duty to disclose what? Querying the putative obligation to return research results to participants

FA Miller, R Christensen, M Giacomini… - Journal of Medical …, 2008 - jme.bmj.com
Many research ethics guidelines now oblige researchers to offer research participants the
results of research in which they participated. This practice is intended to uphold respect for …

CDKN2A/p16 Genetic Test Reporting Improves Early Detection Intentions and Practices in High-Risk Melanoma Families

LG Aspinwall, SL Leaf, ER Dola, W Kohlmann… - … Biomarkers & Prevention, 2008 - AACR
Genetic testing for melanoma has yet to enter routine clinical use because of the scarcity of
available data on the effect of test reporting. A prospective study of 59 members of Utah …

Incidental findings in genetics research using archived DNA

EW Clayton - Journal of Law, Medicine & Ethics, 2008 - cambridge.org
There are countless variations on this theme. The call can come from one of your own
physicians who was called by the investigator. Your physician may or may not be well …

A framework for analyzing the ethics of disclosing genetic research findings

L Eckstein, JR Garrett, BE Berkman - Journal of Law, Medicine & …, 2014 - cambridge.org
Over the past decade, there has been an extensive debate about whether researchers have
an obligation to disclose genetic research findings, including primary and secondary …

Risk perception, worry and satisfaction related to genetic counseling for hereditary cancer

C Bjorvatn, GE Eide, BR Hanestad, N Øyen… - Journal of Genetic …, 2007 - Springer
In this multi center study, genetic counseling for hereditary cancer was evaluated by
assessing patients' worry, perceived risk of developing cancer and satisfaction with genetic …

[HTML][HTML] Ethik der Reanimation und Entscheidungen am Lebensende

SD Mentzelopoulos, K Couper, P Van de Voorde… - Notfall+ …, 2021 - Springer
Zusammenfassung Diese Ethikleitlinien des Europäischen Rats für Wiederbelebung
enthalten evidenzbasierte Empfehlungen für die ethische, routinemäßige Praxis der …