scholarly journals Public and Stakeholder Engagement in Developing Human Heritable Genome Editing Policies: What Does it Mean and What Should it Mean?

2021 ◽  
Vol 3 ◽  
Author(s):  
Ana S. Iltis ◽  
Sarah Hoover ◽  
Kirstin R. W. Matthews
Keyword(s):  
Genome Editing ◽  
Stakeholder Engagement ◽  
Policy Development ◽  
Genetic Manipulation ◽  
Scientific Practice ◽  
Human Embryos ◽  
Unrealistic Optimism ◽  
Policy Makers ◽  
Ethical Concerns ◽  
New Treatments

As scientific research pushes the boundaries of knowledge, new discoveries and technologies often raise ethical and social questions. Public responses vary from surprise, to unrealistic optimism about imminent new treatments, confusion, and absolute opposition. Regardless of the intent, the use of a precise gene editing tool on human embryos, such as CRISPR-Cas9, is an example of such a controversial emerging technology. Substantive disagreement about the appropriate research pathways and permissible clinical applications is to be expected. Many ethical concerns, especially related to genetic manipulation of human embryos, are rooted in deeply held moral, religious, or ideological beliefs that science alone cannot address. Today, more scientists and scientific societies as well as policy makers are calling for public and stakeholder engagement in developing guidelines and policies governing scientific practice. We conducted a critical interpretive review of the literature on public and stakeholder engagement in science policy development regarding emerging technologies to determine the ideals that should guide engagement efforts of entities developing recommendations or guidelines on policy for such technologies. We identify and describe five ideals. To illustrate possible applications of these ideals, we review the engagement efforts described in three reports on heritable human genome editing and assess those efforts in light of these ideals. Finally, we recommend possible avenues for engagement that would advance those goals.

scholarly journals EDITORIAL NEED OF OUR TIMES: IMPACT OF GENOME EDITING SCIENCES AND REQUISITE PREPAREDNESS FOR MOLECULAR BIOTERRORISM

2020 ◽  
Vol 70 (6) ◽  
pp. 1601-03
Author(s):  
Sikandar Hayat Khan
Keyword(s):  
Genome Editing ◽  
Germ Line ◽  
Life Forms ◽  
Human Embryos ◽  
Question Mark ◽  
Ethical Concerns ◽  
Point Of No Return ◽  
Synthetic Genomics ◽  
Community Struggles ◽  
Intelligent Creature

The pace of human evolution has accelerated at an unprecedented rate in the last couple of decades. Never ever before the mankind could witness a global hostage situation by a tiny invisible RNA creature. While the global community struggles at large finding plausible solutions in the information replete era, there are seriouslessons to be learnt. The tiny RNA monster has exposed the vulnerabilities of one the considered most intelligent creature posing a question mark about how to strike the intricate balance between preventive approaches and acquiring the postexposure immunity. The rapidly improving genome editing methods along with synthetic genomics has emerged as a double-edged weapon where on one side it opens newer therapeutic avenues to cure disease, but also its malicious use could results in disasters of limitless magnitudes.The delicate boundaries nature may face terrorism in newer clothes at the hands of nano technological tools to modify genome and synthesizing newer life forms. Unstoppable if it becomes can create man-made disasters with issues leading to emergence of black markets for cloning, designer humans ethnic-specific nucleotide editing for worse and possibly much more. The fiction we saw yesterday is today’s science and can lead the human race to point of no return. “He Jiankui affair” is still one of the genome editing dilemma widely criticized for ethical concerns emerging from germ line editing two human embryos for HIV using Cluster RegularlyInterspaced Short Palindromic Repeats (CRISPR) Cas technology.

scholarly journals 生物醫學技術發展應該改變14天法則限制嗎？

2021 ◽  
Vol 19 (2) ◽  
pp. 87-91
Author(s):  
Hongqi WANG
Keyword(s):  
Science Policy ◽  
Human Embryo ◽  
Stakeholder Engagement ◽  
Policy Development ◽  
Embryo Research ◽  
Human Embryos ◽  
Research Guidelines ◽  
History Of ◽  
Human Embryo Research

LANGUAGE NOTE | Document text in Chinese; abstract also in English. Developments in research have made culturing human embryos beyond the 14-day limit seem technologically feasible. In the article “Emerging Human Embryo Research Technologies, the 14-day Rule, and the Special Status of the Embryo,” the authors examine a proposal for new human embryo and embryoid research guidelines by reviewing the history of the 14-day limit and emerging areas of research that are impacted by these guidelines. However, as noted by the authors, changes in science policy should not be developed solely by scientists. Instead, policy development should reflect the reality of science as a public endeavor. After 40 years of consensus, any attempts to revoke the 14-day limit on the in vitro culturing of human embryos should rely on public and stakeholder engagement.

scholarly journals Knowing when to talk? Plant genome editing as a site for pre-engagement institutional reflexivity

2021 ◽  
pp. 096366252199979
Author(s):  
Robert D.J. Smith ◽  
Sarah Hartley ◽  
Patrick Middleton ◽  
Tracey Jewitt
Keyword(s):  
Genome Editing ◽  
Theory And Practice ◽  
Plant Genome ◽  
Limited Attention ◽  
Full Potential ◽  
Policy Makers ◽  
Institutional Dynamics ◽  
Social Studies Of Science ◽  
High Profile ◽  
A Site

Citizen and stakeholder engagement is frequently portrayed as vital for socially accountable science policy but there is a growing understanding of how institutional dynamics shape engagement exercises in ways that prevent them from realising their full potential. Limited attention has been devoted to developing the means to expose institutional features, allow policy-makers to reflect on how they will shape engagement and respond appropriately. Here, therefore, we develop and test a methodological framework to facilitate pre-engagement institutional reflexivity with one of the United Kingdom’s eminent science organisations as it grappled with a new, high-profile and politicised technology, genome editing. We show how this approach allowed policy-makers to reflect on their institutional position and enrich decision-making at a time when they faced pressure to legitimate decisions with engagement. Further descriptions of such pre-engagement institutional reflexivity are needed to better bridge theory and practice in the social studies of science.

Predicting Psycho-educational Problems in Childhood

1978 ◽  
Vol 3 (3) ◽  
pp. 148-159 ◽  
Author(s):  
Howard S. Adelman
Keyword(s):  
State Of The Art ◽  
Cost Benefit ◽  
Policy Makers ◽  
Health Maintenance ◽  
Ethical Concerns ◽  
Current State ◽  
The Individual ◽  
Assessment Procedures ◽  
Mass Identification ◽  
Ethical Perspectives

Presented are (1) a brief synthesis of several key conceptual and methodological concerns and some ethical perspectives related to identification of psycho-educational problems and (2) conclusions regarding the current state of the art. The conceptual discussion focuses on differentiating prediction from identification and screening from diagnosis; three models used in developing assessment procedures also are presented. Methodologically, the minimal requirements for satisfactory research are described and current problems are highlighted. Three ethical perspectives are discussed; cost-benefit for the individual, models-motives-goals underlying practices, and cost-benefit for the culture. The current state of the art is seen as not supporting the efficacy of the widespread use of currently available procedures for mass screening. Given this point and the methodological and ethical concerns discussed, it is suggested that policy makers reallocate limited resources away from mass identification and toward health maintenance and other approaches to prevention and early-age intervention.

scholarly journals Insights from the evaluation of a provincial healthy eating strategy in Nova Scotia, Canada

2012 ◽  
Vol 16 (10) ◽  
pp. 1870-1878
Author(s):  
S Meaghan Sim ◽  
Sara FL Kirk
Keyword(s):  
Nova Scotia ◽  
Healthy Eating ◽  
Policy Development ◽  
Strategy Implementation ◽  
Canadian Province ◽  
Policy Makers ◽  
Key Stakeholders ◽  
Health Model ◽  
Document Review ◽  
Depth Interviews

AbstractObjectiveHealthy Eating Nova Scotia represents the first provincial comprehensive healthy eating strategy in Canada and a strategy that is framed within a population-health model. Five years after strategy launch, our objective was to evaluate Healthy Eating Nova Scotia to determine perceptions of strategy implementation and strategy outputs. The focus of the current paper is on the findings of this evaluation.DesignWe conducted an evaluation of the strategy through three activities that included a document review, survey of key stakeholders and in-depth interviews with key strategy informants. The findings from each of the activities were integrated to determine what has worked well with strategy implementation, what could be improved and what outputs have resulted.SettingThe evaluation was conducted in the Canadian province of Nova Scotia.ParticipantsParticipants for this evaluation included survey respondents (n 120) and key informants (n 16). A total of 156 documents were also reviewed.ResultsSignificant investments have been made towards inter-sectoral partnerships and resourcing that has provided the necessary leadership and momentum for the strategy. Policy development has been leveraged through the strategy primarily in the health and education sectors and is perceived as a visible success. Clarity of human resource roles and funding within the context of a provincial strategy may be beneficial for continued strategy implementation, as is expansion of policy development.ConclusionsKnown to be the first evaluation of its kind, these findings and related considerations will be of interest to policy makers developing and implementing similar strategies in their own jurisdictions.

scholarly journals Understanding needs and barriers to using geospatial tools for public health policymaking in China

2018 ◽  
Vol 13 (1) ◽  
Author(s):  
Dohyeong Kim ◽  
Yingyuan Zhang ◽  
Chang Kil Lee
Keyword(s):  
Public Health ◽  
Health Policy ◽  
Policy Development ◽  
Policy Making ◽  
Geographical Information Systems ◽  
Geographical Information ◽  
Policy Makers ◽  
Adoption And Implementation ◽  
Challenges And Opportunities ◽  
Geospatial Tools

Despite growing popularity of using geographical information systems and geospatial tools in public health fields, these tools are only rarely implemented in health policy management in China. This study examines the barriers that could prevent policy-makers from applying such tools to actual managerial processes related to public health problems that could be assisted by such approaches, e.g. evidence-based policy-making. A questionnaire-based survey of 127 health-related experts and other stakeholders in China revealed that there is a consensus on the needs and demands for the use of geospatial tools, which shows that there is a more unified opinion on the matter than so far reported. Respondents pointed to lack of communication and collaboration among stakeholders as the most significant barrier to the implementation of geospatial tools. Comparison of survey results to those emanating from a similar study in Bangladesh revealed different priorities concerning the use of geospatial tools between the two countries. In addition, the follow-up in-depth interviews highlighted the political culture specific to China as a critical barrier to adopting new tools in policy development. Other barriers included concerns over the limited awareness of the availability of advanced geospatial tools. Taken together, these findings can facilitate a better understanding among policy-makers and practitioners of the challenges and opportunities for widespread adoption and implementation of a geospatial approach to public health policy-making in China.

scholarly journals An open toolkit for tracking open science partnership implementation and impact

2019 ◽  
Vol 3 ◽  
pp. 1442 ◽  
Author(s):  
E. Richard Gold ◽  
Sarah E. Ali-Khan ◽  
Liz Allen ◽  
Lluis Ballell ◽  
Manoel Barral-Netto ◽  
...  
Keyword(s):  
Annual Report ◽  
Open Data ◽  
Structured Interview ◽  
Open Science ◽  
Social Scientists ◽  
Policy Makers ◽  
Ethical Concerns ◽  
Research And Innovation ◽  
Survey Form ◽  
The Impact

Serious concerns about the way research is organized collectively are increasingly being raised. They include the escalating costs of research and lower research productivity, low public trust in researchers to report the truth, lack of diversity, poor community engagement, ethical concerns over research practices, and irreproducibility. Open science (OS) collaborations comprise of a set of practices including open access publication, open data sharing and the absence of restrictive intellectual property rights with which institutions, firms, governments and communities are experimenting in order to overcome these concerns. We gathered two groups of international representatives from a large variety of stakeholders to construct a toolkit to guide and facilitate data collection about OS and non-OS collaborations. Ultimately, the toolkit will be used to assess and study the impact of OS collaborations on research and innovation. The toolkit contains the following four elements: 1) an annual report form of quantitative data to be completed by OS partnership administrators; 2) a series of semi-structured interview guides of stakeholders; 3) a survey form of participants in OS collaborations; and 4) a set of other quantitative measures best collected by other organizations, such as research foundations and governmental or intergovernmental agencies. We opened our toolkit to community comment and input. We present the resulting toolkit for use by government and philanthropic grantors, institutions, researchers and community organizations with the aim of measuring the implementation and impact of OS partnership across these organizations. We invite these and other stakeholders to not only measure, but to share the resulting data so that social scientists and policy makers can analyse the data across projects.

scholarly journals Renewable Energy (RE) and Theory on Business Sustainability: Malaysia Policy Development

2019 ◽  
Vol 8 (6S3) ◽  
pp. 623-627 ◽  
Keyword(s):  
Renewable Energy ◽  
Environmental Sustainability ◽  
Policy Development ◽  
Critical Analysis ◽  
Clean Energy ◽  
Future Generation ◽  
Policy Makers ◽  
Business Sustainability ◽  
Corporate Managers ◽  
Development Plans

Sustainable energy is described as energy that meets the present demand without jeopardizing the needs of future generation. Sustainable development of energy has become the main focus of recent national policies, strategies and development plans of many countries. Renewable energy (RE) is brought to play as it is deemed sustainable and has the potential to thrive in the vastly competitive market of contemporary business. Growing deployment of RE resources in businesses will provide an impetus to accelerate the drive towards clean energy as well as interest and funding for research and development works. In Malaysia, RE was introduced into the energy mix through the Five Fuel Diversification Policy in 2000 and its share has been growing ever since. This article offers a critical analysis of the developing theories linking environmental sustainability to businesses practice, and discusses their implications on Malaysia’s policy development toward RE. The extensive review presented in this work offers a useful reference for policy makers, corporate managers and researchers who have vested interest in business sustainability and renewable energy related studies.

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