Disclosure of the right of research participants to receive research results

Cancer ◽  
2003 ◽  
Vol 97 (11) ◽  
pp. 2904-2909 ◽  
Author(s):  
Conrad V. Fernandez ◽  
Eric Kodish ◽  
Shaureen Taweel ◽  
Susan Shurin ◽  
Charles Weijer
Keyword(s):  
Research Results ◽  
Research Participants ◽  
The Right ◽  
To Receive

scholarly journals Improving dissemination of study results: perspectives of individuals with cystic fibrosis

2019 ◽  
Vol 15 (3-4) ◽  
pp. 1-14
Author(s):  
Emily Christofides ◽  
Karla Stroud ◽  
Diana Elizabeth Tullis ◽  
Kieran C. O’Doherty
Keyword(s):  
Cystic Fibrosis ◽  
Research Ethics ◽  
Research Results ◽  
Research Participants ◽  
Study Results ◽  
Research Findings ◽  
The Impact ◽  
To Receive ◽  
Accessible Format

The practice of communicating research findings to participants has been identified as important in the research ethics literature, but little research has examined empirically how this occurs and what research participants’ views are in this regard. We interviewed 21 adults with cystic fibrosis who had previously participated in research and 2 research coordinators at a cystic fibrosis clinic. We aimed to better understand research participants’ views on receiving research results, types of findings they are interested in, how they would like to receive this information, and the impact this might have on future participation. Participants reported that they do not generally recall receiving study findings, though many reported that they would like to receive them. While some participants were not interested in receiving results, all participants felt that these results should be provided when desired by participants and believed that receiving study findings would support future participation. Participants felt that an accessible format, such as a lay summary, would be most helpful. This study supports calls to make study findings available to participants, though the format in which they are provided requires consideration. Participants rarely recalled receiving findings despite the clinic in which this study was conducted returning them regularly. Therefore, questions pertaining to the provision of study findings must focus less on whether to share the findings and more on how to share them with participants most effectively. The logistics of providing study findings may be challenging in some cases, but participant support for the practice highlights its importance.

scholarly journals Assessing research participant preferences for receiving study results

2019 ◽  
Vol 4 (3) ◽  
pp. 243-249
Author(s):  
Sarah Cook ◽  
Stephanie Mayers ◽  
Kathryn Goggins ◽  
David Schlundt ◽  
Kemberlee Bonnet ◽  
...  
Keyword(s):  
Focus Groups ◽  
Information Needs ◽  
College Education ◽  
Research Participant ◽  
Stakeholder Group ◽  
Survey Study ◽  
Research Results ◽  
Research Participants ◽  
Study Results ◽  
To Receive

AbstractIntroduction:Dissemination of results to research participants is largely missing from the practices of most researchers. Few resources exist that describe best practices for disseminating information to this important stakeholder group.Methods:Four focus groups were conducted with a diverse group of individuals. All participants were part of a Patient-Centered Outcomes Research Institute-funded survey study. Focus groups aimed to identify participants’ preferences about receiving research results and their reactions to three different dissemination platforms.Results:Four focus groups with 37 participants were conducted, including: (1) adults with one comorbidity, at least a college education, and high socioeconomic status (SES); (2) adults with one comorbidity, less than a college education, and lower SES; (3) adults with low health literacy and/or numeracy; and (4) Black or African American adults. Participants discussed their preferences for research results delivery and how each of the platforms met those preferences. This included information needs as they relate to content and scope, including a desire to receive both individual and aggregate results, and study summaries. Email, paper, and website were all popular avenues of presentation. Some desired a written summary, and others preferred videos or visual graphics. Importantly, participants emphasized the desire for having a choice in the timing, frequency, and types of results.Conclusion:Research participants prefer to receive research results, including study impact and key findings, disseminated to them in an engaging format that allows choice of when and how the information is presented. The results encourage new standards whereby research participants are considered a critical stakeholder group.

DMSA-scintigraphy in paediatrics: Is the evaluation of the geometric mean necessary for the calculation of the differential renal function?

2001 ◽  
Vol 40 (04) ◽  
pp. 107-110 ◽  
Author(s):  
B. Roßmüller ◽  
S. Alalp ◽  
S. Fischer ◽  
S. Dresel ◽  
K. Hahn ◽  
...  
Keyword(s):  
Renal Function ◽  
Geometric Mean ◽  
Region Of Interest ◽  
Posterior View ◽  
Renal Abnormality ◽  
Anterior View ◽  
Differential Renal Function ◽  
The Mean ◽  
The Right ◽  
To Receive

SummaryFor assessment of differential renal function (PF) by means of static renal scintigraphy with Tc-99m-dimer-captosuccinic acid (DMSA) the calculation of the geometric mean of counts from the anterior and posterior view is recommended. Aim of this retrospective study was to find out, if the anterior view is necessary to receive an accurate differential renal function by calculating the geometric mean compared to calculating PF using the counts of the posterior view only. Methods: 164 DMSA-scans of 151 children (86 f, 65 m) aged 16 d to 16 a (4.7 ± 3.9 a) were reviewed. The scans were performed using a dual head gamma camera (Picker Prism 2000 XP, low energy ultra high resolution collimator, matrix 256 x 256,300 kcts/view, Zoom: 1.6-2.0). Background corrected values from both kidneys anterior and posterior were obtained. Using region of interest technique PF was calculated using the counts of the dorsal view and compared with the calculated geometric mean [SQR(Ctsdors x Ctsventr]. Results: The differential function of the right kidney was significantly less when compared to the calculation of the geometric mean (p<0.01). The mean difference between the PFgeom and the PFdors was 1.5 ± 1.4%. A difference > 5% (5.0-9.5%) was obtained in only 6/164 scans (3.7%). Three of 6 patients presented with an underestimated PFdors due to dystopic kidneys on the left side in 2 patients and on the right side in one patient. The other 3 patients with a difference >5% did not show any renal abnormality. Conclusion: The calculation of the PF from the posterior view only will give an underestimated value of the right kidney compared to the calculation of the geometric mean. This effect is not relevant for the calculation of the differntial renal function in orthotopic kidneys, so that in these cases the anterior view is not necesssary. However, geometric mean calculation to obtain reliable values for differential renal function should be applied in cases with an obvious anatomical abnormality.

KEBIJAKAN MODERASI PIDANA MATI

2017 ◽  
Vol 10 (2) ◽  
pp. 193
Author(s):  
Mei Susanto ◽  
Ajie Ramdan
Keyword(s):  
Human Rights ◽  
Death Penalty ◽  
Capital Punishment ◽  
Criminal Code ◽  
Right To Life ◽  
Life Imprisonment ◽  
Research Results ◽  
Moderation Model ◽  
The Right

ABSTRAKPutusan Nomor 2-3/PUU-V/2007 selain menjadi dasar konstitusionalitas pidana mati, juga memberikan jalan tengah (moderasi) terhadap perdebatan antara kelompok yang ingin mempertahankan (retensionis) dan yang ingin menghapus (abolisionis) pidana mati. Permasalahan dalam penelitian ini adalah bagaimana kebijakan moderasi pidana mati dalam putusan a quo dikaitkan dengan teori pemidanaan dan hak asasi manusia dan bagaimana kebijakan moderasi pidana mati dalam RKUHP tahun 2015 dikaitkan dengan putusan a quo. Penelitian ini merupakan penelitian doktrinal, dengan menggunakan bahan hukum primer dan sekunder, berupa peraturan perundang-undangan, literatur, dan hasil-hasil penelitian yang relevan dengan objek penelitian. Penelitian menyimpulkan, pertama, putusan a quo yang memuat kebijakan moderasi pidana mati telah sesuai dengan teori pemidanaan khususnya teori integratif dan teori hak asasi manusia di Indonesia di mana hak hidup tetap dibatasi oleh kewajiban asasi yang diatur dengan undang-undang. Kedua, model kebijakan moderasi pidana mati dalam RKUHP tahun 2015 beberapa di antaranya telah mengakomodasi amanat putusan a quo, seperti penentuan pidana mati di luar pidana pokok, penundaan pidana mati, kemungkinan pengubahan pidana mati menjadi pidana seumur hidup atau penjara paling lama 20 tahun. Selain itu masih menimbulkan persoalan berkaitan dengan lembaga yang memberikan pengubahan pidana mati, persoalan grasi, lamanya penundaan pelaksanaan pidana mati, dan jenis pidana apa saja yang dapat diancamkan pidana mati.Kata kunci: kebijakan, KUHP, moderasi, pidana mati. ABSTRACTConstitutional Court’s Decision Number 2-3/PUU-V/2007, in addition to being the basis of the constitutionality of capital punishment, also provides a moderate way of arguing between retentionist groups and those wishing to abolish the death penalty (abolitionist). The problem in this research is how the moderation policy of capital punishment in aquo decision is associated with the theory of punishment and human rights and how the moderation policy of capital punishment in the draft Criminal Code of 2015 (RKUHP) is related with the a quo decision. This study is doctrinal, using primary and secondary legal materials, in the form of legislation, literature and research results that are relevant to the object of analysis. This study concludes, firstly, the aquo decision containing the moderation policy of capital punishment has been in accordance with the theory of punishment, specificallyy the integrative theory and the theory of human rights in Indonesia, in which the right to life remains limited by the fundamental obligations set forth in the law. Secondly, some of the modes of moderation model of capital punishment in RKUHP of 2015 have accommodated the mandate of aquo decision, such as the determination of capital punishment outside the main punishment, postponement of capital punishment, the possibility of converting capital punishment to life imprisonment or imprisonment of 20 years. In addition, it still raises issues regarding the institutions that provide for conversion of capital punishment, pardon matters, length of delay in the execution of capital punishment, and any types of crime punishable by capital punishment. Keywords: policy, criminal code, moderation, capital punishment.

PROBLEM ASPECTS OF THE IMPLEMENTATION OF CRIMINAL PROCEDURAL NORMS OF PROTECTION OF THE VICTIMS FROM CRIME

2020 ◽  
pp. 72-76
Author(s):  
Яна Валерьевна Самиулина
Keyword(s):  
Preventive Measure ◽  
Criminal Procedure ◽  
Legal Rights ◽  
Criminal Proceedings ◽  
Effective Mechanism ◽  
The Russian Federation ◽  
The Individual ◽  
The Right ◽  
To Receive ◽  
Selection Of

В настоящей статье предпринята попытка исследовать отдельные проблемные аспекты института потерпевшего в российском уголовном процессе. В этих целях подвергнуты анализу правовые нормы, регламентирующие его процессуальный статус. Раскрываются отдельные пробелы уголовно-процессуального законодательства в сфере защиты законных прав и интересов потерпевшего. Автор акцентирует внимание на том, что совершенствование уголовно-процессуального законодательства в части расширения правомочий потерпевшего по отстаиванию своих нарушенных преступлением прав следует продолжить. На основании проведенного исследования действующего законодательства в части регламентации прав потерпевшего от преступления предлагается расширить перечень получаемых им копий постановлений, указанных в п. 13 ч. 2 ст. 42 УПК РФ. Автор предлагает включить в перечень указанной законодательной нормы право получения потерпевшим копии постановления об избрании конкретного вида меры пресечения, избранного в отношении подозреваемого (обвиняемого). Для создания действенного механизма защиты интересов потерпевших от преступления юридических лиц предлагаем ч. 9 ст. 42 УПК РФ изложить в следующей редакции: «в случае признания потерпевшим юридического лица его процессуальное право в уголовном процессе осуществляет представляющий его профессиональный адвокат». This article attempts to investigate certain problematic aspects of the institution of the victim in the Russian criminal process. For this purpose, analyzed the individual norms governing his procedural status. Separate gaps of the criminal procedure legislation in the sphere of protection of the legal rights and interests of the victim are disclosed. The author emphasizes that the improvement of the criminal procedure legislation in terms of the extension of the victim’s authority to defend his rights violated by the crime should be continued. On the basis of the study of the current legislation regarding the regulation of the rights of the victim of a crime, it is proposed to expand the list of decisions received by him, referred to in paragraph 13, part 2 of article 42 Code of Criminal Procedure. The author proposes to include in the list of the indicated legislative norm the right to receive the victim a copy of the decision on the selection of a specific type of preventive measure, selected in relation to the suspect (accused). To create an effective mechanism for protecting the interests of legal entities victims of a crime, we offer part 9 of art. 42 of the Code of Criminal Procedure of the Russian Federation shall be reworded as follows: «if a legal entity is recognized as a victim, his procedural right in criminal proceedings is exercised by the professional lawyer representing him».

Safe Use of the Assimilative Capacity of the Marine Environment for Waste Disposal – Is It Feasible?

1986 ◽  
Vol 18 (4-5) ◽  
pp. 233-244 ◽  
Author(s):  
J. E. Portmann ◽  
R. Lloyd
Keyword(s):  
Marine Environment ◽  
Salt Marshes ◽  
Safety Margin ◽  
Assimilative Capacity ◽  
Anthropogenic Inputs ◽  
Upper Limit ◽  
Safe Limits ◽  
Control Authority ◽  
The Right ◽  
To Receive

For centuries the sea has absorbed a variety of inputs from rivers, streams, salt marshes and the atmosphere. It is generally accepted that additional limited inputs by man are unlikely to have a significant effect on the marine environment. Various control systems have been constructed to provide a framework within which the regulation of anthropogenic inputs can be achieved. These are briefly reviewed. With care, and in the light of past experience in both freshwater and marine environments, reasonable assumptions or estimations can be applied where uncertainties exist; safe limits can therefore be set for discharges. Case histories are used to illustrate the contention that it is possible to assess the assimilative capacity of a marine area to receive wastes. There is a major distinction to be drawn between contamination and pollution of the marine environment. Moreover, acknowledgement of the assimilative capacity concept in the marine environment does not automatically provide dischargers with the right to utilise that capacity either in part or to the upper limit. What it does is indicate the upper limit which must not be exceeded if pollution is to be avoided, and provide an indication to the control authority of the safety margin involved in the discharge limits they set accordingly.

FREE EXPRESSION OR EQUAL SPEECH?

2020 ◽  
Vol 37 (2) ◽  
pp. 153-169
Author(s):  
Teresa M. Bejan
Keyword(s):  
Freedom Of Expression ◽  
Free Expression ◽  
Freedom Of Association ◽  
Classical Liberal ◽  
Freedom Of Thought ◽  
The Right ◽  
Equal Right ◽  
To Receive ◽  
The Ideal

AbstractThe classical liberal doctrine of free expression asserts the priority of speech as an extension of the freedom of thought. Yet its critics argue that freedom of expression, itself, demands the suppression of the so-called “silencing speech” of racists, sexists, and so on, as a threat to the equal expressive rights of others. This essay argues that the claim to free expression must be distinguished from claims to equal speech. The former asserts an equal right to express one’s thoughts without interference; the latter the right to address others, and to receive a hearing and consideration from them, in turn. I explore the theory of equal speech in light of the ancient Athenian practice of isegoria and argue that the equality demanded is not distributive but relational: an equal speaker’s voice should be counted as “on a par” with others. This ideal better captures critics’ concerns about silencing speech than do their appeals to free expression. Insofar as epistemic and status-harms provide grounds for the suppression and exclusion of some speech and speakers, the ideal of equal speech is more closely connected with the freedom of association than of thought. Noticing this draws attention to the continuing—and potentially problematic—importance of exclusion in constituting effective sites of equal speech today.

scholarly journals Automatic Placement of Genomic Research Results in Medical Records: Do Researchers Have a Duty? Should Participants Have a Choice?

2015 ◽  
Vol 43 (4) ◽  
pp. 827-842
Author(s):  
Anya E.R. Prince ◽  
John M. Conley ◽  
Arlene M. Davis ◽  
Gabriel Lázaro-Muñoz ◽  
R. Jean Cadigan
Keyword(s):  
Medical Record ◽  
Medical Records ◽  
Genomic Research ◽  
Research Results ◽  
Research Participants ◽  
Difficult Question ◽  
Automatic Placement ◽  
Study Participants ◽  
Research Studies

The growing practice of returning individual results to research participants has revealed a variety of interpretations of the multiple and sometimes conflicting duties that researchers may owe to participants. One particularly difficult question is the nature and extent of a researcher’s duty to facilitate a participant’s follow-up clinical care by placing research results in the participant’s medical record. The question is especially difficult in the context of genomic research. Some recent genomic research studies — enrolling patients as participants — boldly address the question with protocols dictating that researchers place research results directly into study participants’ existing medical records, without participant consent. Such privileging of researcher judgment over participant choice may be motivated by a desire to discharge a duty that researchers perceive themselves as owing to participants. However, the underlying ethical, professional, legal, and regulatory duties that would compel or justify this action have not been fully explored.

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