scholarly journals Whether, when, how, and how much? General public’s and cancer patients’ views about the disclosure of genomic secondary findings

2021 ◽  
Vol 14 (1) ◽  
Author(s):  
Jude Emmanuel Cléophat ◽  
Michel Dorval ◽  
Zaki El Haffaf ◽  
Jocelyne Chiquette ◽  
Stephanie Collins ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Group Discussion ◽  
Quebec City ◽  
Secondary Findings ◽  
The Public ◽  
Psychosocial Wellbeing ◽  
The Right To Know ◽  
Information Confidentiality ◽  
The Right ◽  
To Receive

Abstract Background Data on the modalities of disclosing genomic secondary findings (SFs) remain scarce. We explore cancer patients’ and the general public’s perspectives about disclosing genomic SFs and the modalities of such disclosure. Methods Sixty-one cancer patients (n = 29) and members of the public (n = 32) participated in eight focus groups in Montreal and Quebec City, Canada. They were asked to provide their perspectives of five fictitious vignettes related to medically actionable and non-actionable SFs. Two researchers used a codification framework to conduct a thematic content analysis of the group discussion transcripts. Results Cancer patients and members of the public were open to receive genomic SFs, considering their potential clinical and personal utility. They believed that the right to know or not and share or not such findings should remain the patient’s decision. They thought that the disclosure of SFs should be made mainly in person by the prescribing clinician. Maintaining confidentiality when so requested and preventing genetic discrimination were considered essential. Conclusion Participants in this study welcomed the prospect of disclosing genomic SFs, as long as the right to choose to know or not to know is preserved. They called for the development of policies and practice guidelines that aim to protect genetic information confidentiality as well as the autonomy, physical and psychosocial wellbeing of patients and families.

Whether, when, how, and how much? General public’s and cancer patients’ views about the disclosure of genomic secondary findings

2021 ◽  
Author(s):  
Jude Emmanuel Cléophat ◽  
Michel Dorval ◽  
Zaki El Haffaf ◽  
Jocelyne Chiquette ◽  
Stephanie Collins ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Quebec City ◽  
Secondary Findings ◽  
The Public ◽  
Psychosocial Wellbeing ◽  
The Right To Know ◽  
Personal Utility ◽  
Information Confidentiality ◽  
The Right ◽  
To Receive

Abstract Background:Data on the modalities of disclosing genomic secondary findings (SFs) remain scarce. We explore cancer patients’ and the general public’s perspectives about disclosing genomic SFs and the modalities of such disclosure. Methods:Sixty-one cancer patients (n=29) and members of the public (n=32) participated in eight focus groups in Montreal and Quebec City, Canada. They were asked to provide their perspectives of five fictitious vignettes related to medically actionable and non-actionable SFs. A thematic analysis of the transcripts was conducted. Results:Cancer patients and members of the public were open to receive genomic SFs, considering their potential clinical and personal utility. They believed that the right to know or not and share or not such findings should remain the patient’s decision. They thought that the disclosure of SFs should be made mainly in person by the prescribing clinician. Maintaining confidentiality when so requested and preventing genetic discrimination were considered essential. Conclusion:Participants in this study welcomed the prospect of disclosing genomic SFs, as long as the right to choose to know or not to know is preserved. Policies and practice guidelines aiming to protect genetic information confidentiality, and patients’ and families’ autonomy, physical and psychosocial wellbeing are expected.

scholarly journals Vanhuksen oikeus hoivaan ja omaisolettama

Gerontologia ◽  
2017 ◽  
Vol 31 (3) ◽  
pp. 227-242
Author(s):  
Laura Kalliomaa-Puha
Keyword(s):  
Family Members ◽  
Elderly Person ◽  
Social Health ◽  
Legal Responsibility ◽  
Public Authorities ◽  
The Public ◽  
Know How ◽  
The Family ◽  
The Right ◽  
To Receive

Jokaisella vanhuksella on Suomessa yksilöllinen, viime kädessä perustuslaissa taattu, oikeus riittävään hoivaan ja huolenpitoon. Silti tämä oikeus on usein käytännössä riippuvainen siitä, onko vanhalla ihmisellä omaisia tukenaan. Tässä artikkelissa tarkastellaan sitä, miten oikeus hoivaan ja hoitoon taataan lainsäädännössä. Omaisilla ei lain mukaan ole vastuuta hoivan järjestämisestä, mutta silti lainsäädäntö monessa kohdin ikään kuin olettaa omaisten olevan vanhuksen tukena. Vaikka omaiset usein ovatkin tukena, miten perusoikeus hoivaan ja huolenpitoon toteutuu niillä vanhuksilla, joilla ei ole omaisia? Artikkeli nostaa vakavimpana omaisolettaman riskinä esiin ne vanhukset, joilla on omaisia, mutta joiden omaiset eivät osaa tai halua auttaa. Right to care and presumption of family and friends in the Finnish legislation According to Finnish legislation the public authorities must guarantee adequate social, health and medical services for those old persons who cannot obtain means necessary for a life of dignity. Yet in practice this right to receive indispensable subsistence and care often depends on the fact whether the old person happens to have family or friends to help her or him. As if the legislation supposes there are friends and family to help, even though, according to Finnish law, family members do not have legal responsibility to take care of an elderly person. This article elaborates how the right to care is guaranteed in Finnish legislation and what the law says about the responsibilities of the family. Even though most of the relatives do help their elderlies, how is the right to care fulfilled for those old persons who do not have family? Perhaps the elderlies who have family and friends, which do not help or do not know how to, are in the most vulnerable situation.

Health Care System Structure in the State of Israel

2019 ◽  
Vol 88 (1) ◽  
pp. 39-46
Author(s):  
Mohammad Yasser Sabbah
Keyword(s):  
Health Care ◽  
Medical Treatment ◽  
Health System ◽  
Health Care System ◽  
The State ◽  
The Public ◽  
The Right ◽  
To Receive ◽  
State Of Israel ◽  
Care System

The health care system in the State of Israel consists of two sectors - the public sector, which includes government-owned hospitals and medical institutes. The public health sector includes the community health system, health funds, family medicine, the general care system and the mental health care system. The second sector is the private sector, which includes private hospitals and medical institutes. Both sectors are supervised by the Israeli Ministry of Health, which is the supreme governmental authority through which it implements its policy in the entire health system in Israel. The law provides and guarantees medical insurance for every resident of Israel, the right to receive medical treatment, the prohibition of discrimination, informed consent to medical treatment, the right to receive an additional medical opinion, the dignity and privacy of the patient and the right to attend. Health funds in Israel were established before the State of Israel was established. The ideological concept of the health funds was based on the principle of equality and mutual assistance.

scholarly journals Komunikasi Dalam Kehidupan Beragama Melalui BISINDO

2021 ◽  
Vol 16 (2) ◽  
pp. 152
Author(s):  
I Made Sukma Muniksu
Keyword(s):  
Religious Life ◽  
Religious Communities ◽  
Social Cooperation ◽  
Internal Environment ◽  
Human Relations ◽  
The Right To Know ◽  
Core Elements ◽  
The Right ◽  
Different Cultures ◽  
To Receive

Living in a social and religious life, you will find very rapid differences in communication between Deaf and Hearing Friends. So that each individual must respect and respect each other. In this way, religious harmony will be realized. Listeners can learn BISINDO so they can communicate with Deaf Friends. Listening friends can learn starting from the easiest, namely recognizing letters and numbers. Because through letters and numbers can provide symbols that are very useful in communication. Communication is a basic human activity. There is not an individual who will not be involved in communication. In this relationship in communication, it is in the form of tolerance and information between religious communities which are the core elements of limited religious harmony within the internal environment of a religion. Meanwhile, horizontal relationships, or patterns of human relations with each other or humans with surrounding communities of different cultures, races, religions, be it in the form of social cooperation or individual patterns with individuals to build a stronger sense of brotherhood. A society with a social and religious life definitely needs communication. Even though the communication occurred between Listening Friends and Deaf Friends. All activities that occur in religious life cannot be separated from the communication from the communicator to the communicant. A deaf friend who uses BISINDO as a communicant has the right to know what information he gets from other people. In a diverse life, Teman Deaf also has the right to receive religious teachings that he believes in.

scholarly journals The question of crime: How much does the public have the right to know?

2009 ◽  
Vol 15 (2) ◽  
pp. 71-84 ◽  
Author(s):  
Joy Cameron-Dow
Keyword(s):  
Criminal Justice ◽  
Crime Reporting ◽  
The Internet ◽  
Right To Know ◽  
The Public ◽  
Mainstream Media ◽  
International Scale ◽  
The People ◽  
The Right To Know ◽  
The Right

The public right to know is of particular significance when considering the reporting of crime and criminal justice. The internet has demonstrated strong influences upon crime reporting in mainstream media, including the range of material it provides to audiences. In addition, the internet has exposed journalists to new legal and ethical ramifications that accompany reportage on an international scale and, while it may be ‘giving the people what they want’, it has also exacerbated the controversy surrounding the perennial question of how much the public has a right to know. 

EFFECTIVENESS OF PUBLIC PARTICIPATION PROGRAMME: A FEEDBACK FROM PARTICIPANTS (SABAK BERNAM DISTRICT LOCAL PLAN AND KUALA LUMPUR STRUCTURE PLAN)

2007 ◽  
Vol 5 ◽  
Author(s):  
Dasimah Omar ◽  
Oliver Ling Hoon Leh
Keyword(s):  
Sustainable Development ◽  
Public Participation ◽  
Negative Impact ◽  
Public Awareness ◽  
Free Access ◽  
Kuala Lumpur ◽  
Agenda 21 ◽  
The Public ◽  
The Right To Know ◽  
The Right

Nowadays, public awareness on the potential dangers of environmental problems and the negative impact from the development has been increasing. Public has the right to know and participate in making decisions, particularly in those have potentially affect on the communities in which they live and work. Furthermore, Malaysia is adopting the Rio Declaration - Sustainable Development and Agenda 21. One of the fundamental prerequisites for the achievement of sustainable development is broad public participation in decision-making. Research had been carried out to identify the effectiveness of the public participation programme for Sabak Bemam District Local Plan 2002-2015 and Kuala Lumpur Structure Plan 2020. The research was carried out by collecting feedback from the participants of public exhibitions and workshops for both of the plans. Through the research, it was found that series of workshops are the effective method of public participation for development plan as compared to public exhibition after draft proposal of the plan has been completed. An effective and successful public participation programme should allow members of the community to have an active voice in the process and to have a free access to important information.

Clinical Meditation Teacher: A New Role for Health Professionals

2011 ◽  
Vol 16 (2) ◽  
pp. 145-148 ◽  
Author(s):  
Richard Schaub
Keyword(s):  
Mental Health ◽  
Health Care ◽  
Health Professionals ◽  
Public Acceptance ◽  
The Public ◽  
The Right ◽  
The Mind ◽  
To Receive ◽  
Care Costs

The support for integrating meditation into health care and mental health has reached scientific and public acceptance. For the public to receive the benefits of the mind—body medicine of meditation, it is time for health professionals to step into the role of clinical meditation teachers. Clinical meditation refers to the ability to discern the right kinds of meditation for the right person at the right time. With the increased emphasis on preventative medicine and self-care skills to reduce health care costs, the timing is absolutely appropriate for health professionals to gain skills in this new role.

scholarly journals Keterbukaan Informasi Publik Data Pertanahan

Widya Bhumi ◽  
2021 ◽  
Vol 1 (1) ◽  
pp. 58-64
Author(s):  
Nur Rahmanto
Keyword(s):  
Information Disclosure ◽  
Spatial Planning ◽  
Public Information ◽  
Right To Know ◽  
Public Officials ◽  
Human Right ◽  
The Public ◽  
Government Administration ◽  
The Right To Know ◽  
The Right

In essence, every citizen has the right to know about all activities or policies carried out by public officials, this is in addition to the right to obtain information, it is a human right as well as a means of public control over government administration, but the right to obtain this information is often There are obstacles both in terms of regulations and unsupportive behavior of public officials. Law Number 14 of 2008 (UU KIP) which regulates the issue of public information disclosure in its implementation conflicts with Permenagraria / Ka BPN Number 3 of 1997, in which the regulation of the Minister of State for Agrarian Affairs regulates restrictions on restrictions in providing information on land data which are often inconsistent with with the regulation of public information disclosure regulated in the KIP Law, so that the public does not immediately get information on land data which in turn will lead to a lawsuit from the public to the Ministry of Agrarian Affairs and Spatial Planning / BPN at the Information Commission and State Administrative Court. By using the desk study method, this paper will examine the information disclosure arrangements stipulated in the two regulations referred to as well as the conflicts that occur both in the articles of the contents of the regulations and in their implementation practices so that solutions or recommendations will be obtained so that public information disclosure can run properly in Indonesia country.Keywords: public information disclosure, data sharing, land data . Intisari: Setiap warga masyarakat pada hahekatnya adalah berhak untuk tahu mengenai semua kegiatan atau kebijakan yang dilakukan oleh pejabat publik, hal ini selain hak untuk memperoleh informasi itu adalah hak asasi setiap manusia juga sebagai sarana kontrol publik terhadap penyelenggaraan pemerintahan, akan tetapi hak untuk memperoleh informasi ini sering ada kendala baik dari sisi regulasi maupun perilaku petugas publik yang tidak mendukung. Undang Undang Nomor 14 Tahun 2008 (UU KIP) yang mengatur masalah keterbukaan informasi publik dalam pelaksanannya berbenturan dengan Permenagraria/Ka BPN Nomor 3 Tahun 1997, dimana di dalam peraturan Menteri Negara Agraria dimaksud diatur mengenai pembatasan pembatasan dalam memberikan informasi data pertanahan yang seringkali tidak sejalan dengan pengaturan keterbukaan informasi publik yang diatur di dalam UU KIP, sehingga masyarakat tidak serta merta bisa mendapatkan informasi data pertanahan yang pada akhirnya akan memunculkan gugatan dari masyarakat kepada Kementerian Agraria dan Tata Ruang/BPN di Komisi Informasi  dan Pengadilan Tata Usaha Negara. Dengan menggunakan methode desk study tulisan ini akan mengkaji pengaturan keterbukaan informasi yang diatur di dalam kedua peraturan dimaksud serta pertentangan yang terjadi baik di dalam pasal pasal isi peraturan maupun di dalam praktek pelaksanaannya untuk selanjutnya akan diperoleh solusi atau rekomendasi sehingga keterbukaan informasi publik dapat berjalan dengan baik di Negara Indonesia.Kata Kunci: keterbukaan informasi publik, berbagi data, data pertanahan.

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