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To purchase or authenticate to the full-text of this article, please visit this link: http://dx.doi.org/10.1111/j.1467-8519.2008.00646.x Byline: RIEKE VAN DER GRAAF (1), JOHANNES JM VAN DELDEN (1) Keywords: conceptual clarification; dignity; euthanasia; history; human dignity; research ethics; respect for autonomy Abstract: ABSTRACT Over the past few decades the concept of (human) dignity has deeply pervaded medical ethics. Appeals to dignity, however, are often unclear. As a result some prefer to eliminate the concept from medical ethics, whereas others try to render it useful in this context. We think that appeals to dignity in medical ethics can be clarified by considering the concept from an historical perspective. Firstly, on the basis of historical texts we propose a framework for defining the concept in medical debates. The framework shows that dignity can occur in a relational, an unconditional, a subjective and a Kantian form. Interestingly, all forms relate to one concept since they have four features in common: dignity refers, in a restricted sense, to the 'special status of human beings'; it is based on essential human characteristics; the subject of dignity should live up to it; and it is a vulnerable concept, it can be lost or violated. We argue that being explicit about the meaning of dignity will prevent dignity from becoming a conversation-stopper in moral debate. Secondly, an historical perspective on dignity shows that it is not yet time to dispose of dignity in medical ethics. At least Kantian and relational dignity can be made useful in medical ethics. Author Affiliation: (1)Julius center for Health Sciences and Primary Care, University Medical center, Utrecht Article note: Rieke van der Graaf, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Huispost STR 6.131, PO Box 85500, 3508 GA Utrecht, Netherlands. E-mail: r.vandergraaf@umcutrecht.nl, Telephone 00 31 88 756 8640, Fax 00 31 88 756 8099

The inclusion of children's samples in biobanks brings forward specific ethical issues. Guidelines indicate that children should be involved in the consent procedure. It is, however, unclear how to allocate an appropriate role for children. Knowledge of current practice will be helpful in addressing this issue. Therefore, we conducted an international multiple-case study on the child's role in consent procedures in pediatric biobanks. Four biobanks were included: (1) LifeLines, (2) Prevention and Incidence of Asthma and Mite Allergy (PIAMA), (3) Young-HUNT3 and (4) the Oxford Radcliffe Biobank contribution to the Children's Cancer and Leukaemia Group tissue bank (ORB/CCLG). Four themes linked to the child's role in the consent procedure emerged from the multiple-case study: (1) motives to involve the child, (2) informing the child, (3) the role of dissent, assent and consent and (4) voluntariness of children to participate. We conclude that biobank characteristics influence the biobank's motives to include children in the consent procedure. Moreover, the motives to include children influence how the children are involved in the consent procedure, and the extent to which children are able to make voluntary decisions as part of the consent procedure. This insight is valuable when designing pediatric biobank governance. [ABSTRACT FROM AUTHOR]

Background: The rapid implementation of patient portals, through which patients can view their electronic health record, creates possibilities for information exchange and communication between patients and health care professionals. However, real-time disclosure of test results and clinical reports poses a source of concern.Objective: This study aimed to examine negative experiences resulting from real-time disclosure of medical information through a patient portal.Methods: Data were collected over a 2-year period in 4 datasets consisting of incidents reported by health care professionals, complaints of patients, patient issues at a portal helpdesk, and a survey among health care professionals. Incidents, complaints, issues, and answers on the survey were counted and analyzed through an iterative process of coding.Results: Within the chosen time frame of 2 years, on average, 7978 patients per month logged into the portal at least once. The amount of negative incidents and complaints was limited. A total of 6 incidents, 4 complaints, and 2506 issues at the helpdesk concerning the patient portal were reported, of which only 2, 1, and 3 cases of these respective databases concerned real-time disclosure of medical information through the patient portal. Moreover, 32 out of 216 health care professionals reported patients that had negative experiences with real-time disclosure. Most negative consequences concerned confused and anxious patients when confronted with unexpected or incomprehensible results.Conclusions: Real-time access through a patient portal did not substantially result in negative consequences. The negative consequences that did occur can be mitigated by adequate preparation and instruction of patients concerning the various functionalities of the patient portal, real-time disclosure of test results in particular, and can also be managed through educating health care professionals about the patient portal and making adjustments in the daily practice of health care professionals. [ABSTRACT FROM AUTHOR]

Competing Interests: Conflicts of interest: Dr. Aitken reports grants from The Farr Institute at The University of Manchester is supported by a 10-funder consortium led by the MRC (Grant No: MR/M501633/2), during the conduct of the study; Dr. Black reports grants from Farr Institute UK (MRC collaboration), grants from ESRC (ADRC-Scotland), during the conduct of the study; Dr Cunningham-Burley reports grants from Farr Institute UK (MRC collaboration (Grant No: MR/M501633/2), grants from ESRC (ADRC-Scotland), during the conduct of the study; Dr. Denegri reports non-financial support and other from National Institute for Health Research (NIHR), personal fees and non-financial support from University College London, personal fees from Google DeepMind Health, grants from Wellcome Trust, other from a wide range of engagements, speaking invitations and requests for advice consistent with my expertise some of which relates to the submitted work, outside the submitted work; Dr. Goddard reports grants from MRC, during the conduct of the study; Dr. Tully reports grants from The Farr Institute at The University of Manchester which is supported by a 10-funder consortium led by the MRC (Grant No: MR/M501633/2), during the conduct of the study; non-financial support from EuroRec Institute, non-financial support from BioData World Congress, outside the submitted work.