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Public attitudes towards novel reproductive technologies: a citizens' jury on mitochondrial donation.

ABSTRACT: STUDY QUESTION:Does an informed group of citizens endorse the clinical use of mitochondrial donation in a country where this is not currently permitted? SUMMARY ANSWER:After hearing balanced expert evidence and having opportunity for deliberation, a majority (11/14) of participants in a citizens' jury believed that children should be able to be born using mitochondrial donation. WHAT IS KNOWN ALREADY:Research suggests that patients, oocyte donors and health professionals support mitochondrial donation to prevent transmission of mitochondrial disease. Less is known about public acceptability of this novel reproductive technology, especially from evidence using deliberative methods. STUDY DESIGN, SIZE, DURATION:This study comprised a citizens' jury, an established method for determining the views of a well-informed group of community members. The jury had 14 participants, and ran over one and a half days in 2017. PARTICIPANTS/MATERIALS, SETTING, METHODS:Jurors were members of the public with no experience of mitochondrial disease. They heard and engaged with relevant evidence and were asked to answer the question: 'Should Australia allow children to be born following mitochondrial donation?' MAIN RESULTS AND THE ROLE OF CHANCE:Eleven jurors decided that Australia should allow children to be born following mitochondrial donation; 7 of whom added conditions such as the need to limit who can access the intervention. Three jurors decided that children should not (or not yet) be born using this intervention. All jurors were particularly interested in the reliability of evidence, licensing/regulatory mechanisms and the rights of children to access information about their oocyte donors. LIMITATIONS, REASONS FOR CAUTION:Jurors' views were well informed and reflected critical deliberation and discussion, but are not intended to be representative of the whole population. WIDER IMPLICATIONS OF THE FINDINGS:When presented with high quality evidence, combined with opportunities to undertake structured deliberation of novel reproductive technologies, members of the public are able to engage in detailed discussions. This is the first study to use an established deliberative method to gauge public views towards mitochondrial donation. STUDY FUNDING/COMPETING INTEREST(S):This study was funded by a University of Sydney Industry and Community Collaboration Seed Award (2017), which was awarded contingent on additional funding from the Mito Foundation. Additional funding was provided by the Mito Foundation. The Foundation was not involved in jury facilitation or deliberation, nor analysis of research data. TRIAL REGISTRATION NUMBER:Not applicable.

SUBMITTER: Newson AJ

PROVIDER: S-EPMC6443113 | biostudies-literature | 2019 Apr

REPOSITORIES: biostudies-literature

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Public attitudes towards novel reproductive technologies: a citizens' jury on mitochondrial donation.

Newson A J AJ de Lacey S S Dowling D K DK Murray S S Sue C M CM Thorburn D R DR Gillam L L Degeling C C

Human reproduction (Oxford, England) 20190401 4

<h4>Study question</h4>Does an informed group of citizens endorse the clinical use of mitochondrial donation in a country where this is not currently permitted?<h4>Summary answer</h4>After hearing balanced expert evidence and having opportunity for deliberation, a majority (11/14) of participants in a citizens' jury believed that children should be able to be born using mitochondrial donation.<h4>What is known already</h4>Research suggests that patients, oocyte donors and health professionals su ...[more]

PMID: 30865256

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Project description:Study questionWhat are the knowledge and views of UK-based women towards egg donation (ED) and egg sharing (ES)?Summary answerLacking knowledge of the practices of ED and ES could be an influential factor in donor egg shortages, rather than negative perceptions or lack of donor anonymity and financial incentives.What is known alreadyThe increasing age of women trying to conceive has led to donor egg shortages, with ED and ES failing to meet demand. Indeed, in recent years in the UK, ES numbers have fallen. This results in long waiting lists, forcing patients abroad for fertility treatment to take up cross border reproductive care. Previous research suggests a lack of knowledge of ED among members of the general public; however, no study has yet assessed knowledge or views of ES in the general public.Study design, size, durationSix hundred and thirty-five UK-based women over 18 years were voluntarily recruited from social media community groups by convenience sampling. The recruitment period was from February to April 2020.Participants/materials, setting, methodsParticipants completed a previously validated questionnaire regarding female fertility, ED and ES, including knowledge, perceptions and approval of the practices and relevant legislation. This included ranking key benefits and issues regarding egg sharing. The questionnaire was completed using the online Qualtrics survey software. Statistical analysis was conducted using SPSS.Main results and the role of chanceRegarding knowledge of ED and ES, 56.3% and 79.8%, respectively had little or no prior knowledge. Upon explanation, most approved of ED (85.8%) and ES (70.4%). A greater proportion of respondents would donate to a family member/friend (49.75%) than to an anonymous recipient (35.80%). Overall, ES was viewed less favourably than ED, with ethical and practical concerns highlighted. Women aged 18-30 years were significantly more likely to approve of egg donation practice compared to those aged >30 years (P < 0.0001). Those against ES found fears of financial coercion or negative psychological wellbeing the most concerning. About 35.8% and 49.7% would personally consider anonymous and known ED, respectively, whilst 56.7% would consider ES. Those answering in favour of egg sharing were significantly more likely to give higher benefit ratings compared to those against the practice (P < 0.001). Most agreed (55.8%) with and were not deterred to donate (60.1%) by the 'Disclosure of Donor Identity' legislation. Only 31.6% agreed with the compensatory cap; however, 52.7% would not be more motivated to donate by an increased cap.Limitations, reasons for cautionThere were several limitations of the study, including the use of convenience sampling and the voluntary nature of participation opening the study up to sampling and participation bias. Finally, closed questions were predominantly used to allow the generation of quantitative data and statistical analysis. However, this approach prevented opinion justification and qualitative analysis, limiting the depth of conclusions drawn.Wider implications of the findingsTo our knowledge, this is the first study to survey the general public's knowledge and views of ED/ES using a previously validated questionnaire. The conclusion that lack of knowledge could be contributing to the current donor shortfall in the UK demonstrates that campaigns to inform women of the practices are necessary to alleviate donor oocyte shortages.Study funding/competing interest(s)No external funds were used for this study. The authors have no conflicts of interest.Trial registration numberNA.

Project description:Background: The perception of organ donation and brain death among Syrian population has not been previously explored. The goal of this study is to evaluate the attitude and knowledge of organ donation among Syrians and the willingness of this population to donate their organs.Methods: We conducted a survey-based cross-sectional study in four hospitals in Aleppo, Syria in November 2019. Patient demographic, awareness of brain death; and attitude toward organ donation were collected and analyzed.Results: A total of 350 individuals were invited to participate in the survey among whom 303 (197 females, 106 males) agreed to participate in the study (87% response rate). The majority of our participants (n?=?249, 82%) heard about organ donation with television (n?=?166, 55%), social media (n?=?77, 25%), and the internet (n?=?77, 25%) being the most common sources of information. When assessing knowledge about brain death, only 40% (n?=?116) answered 3 or more questions (out of 5) correctly. Fifty-eight percent (n?=?176) of respondents agreed with the idea of organ donation and 183 (62%) would like to donate their organs one day. The leading motivation to organ donation was the desire to help (n?=?234, 77%), while the most common reason to refuse donation was the refusal to disfigure a dead body by removing an organ (n?=?125, 41%). Religious reasons were cited as motivation for organ donation by 43% of participants (n?=?130), and a reason for refusing to donate organs by 24% (n?=?71). Most respondents (n?=?261, 88%) were unaware of the laws and legislations related to organ donation in Syria. When asked if religion and law were encouraging organ donation, 76% of respondents (n?=?226) would donate their organs. Although more positive attitude was found in those with better brain death knowledge (score???3), this did not translate into more willingness to donate organs in this group of participants.Conclusions: The promotion of organ donations from deceased donors is a necessity given the rising shortage of organs. The information provided by this study could help policy makers build future strategies to promote deceased organ donation programs and overcome current obstacles preventing such initiatives from achieving their goals.

Project description:Genetic modification of farm animals has not been well accepted by the public. Some modifications have the potential to improve animal welfare. One such example is the use of gene editing (i.e. CRISPR (clustered regularly interspaced short palindromic repeats)) to spread the naturally occurring POLLED gene, as these genetically hornless animals would not need to experience the painful procedures used to remove the horns or horn buds. The aim of the current study was to assess public attitudes regarding the use of GM to produce polled cattle. United States (US) citizens (n = 598), recruited via Amazon Mechanical Turk, were asked "Do you think genetically modifying cows to be hornless would be…", and responded using a 7-point Likert scale (1 = a very bad thing, 4 = neither good nor bad, 7 = a very good thing). Participants were then asked to indicate if they would be willing to consume products from these modified animals. We excluded 164 of the original 598 participants for not completing the survey, failing any of three attention check questions, or providing no or unintelligible qualitative responses. Respondents were then asked to provide a written statement explaining their answers; these reasons were subjected to qualitative analysis. Comparison of Likert scale ratings between two groups was done using the Wilcoxon rank-sum test, and comparisons between more than two groups were done using the Kruskal-Wallis rank test. More people responded that the modification would be good (Likert ≥ 5; 65.7%) than bad (Likert ≤ 3; 23.1%), and that they would be willing to consume products from these animals (Likert ≥ 5; 66.0%) versus not consume these products (Likert ≤ 3; 22.6%). Qualitative analysis of the text responses showed that participant reasoning was based on several themes including animal welfare, uncertainty about the technology, and worker well-being. In conclusion, many participants reported positive attitudes towards GM polled cattle; we suggest that people may be more likely to support GM technologies when these are perceived to benefit the animal.

Project description:BackgroundThe SARS-CoV-2 pandemic has highlighted once more the great need for comprehensive access to, and uncomplicated use of, pre-existing patient data for medical research. Enabling secondary research-use of patient-data is a prerequisite for the efficient and sustainable promotion of translation and personalisation in medicine, and for the advancement of public-health. However, balancing the legitimate interests of scientists in broad and unrestricted data-access and the demand for individual autonomy, privacy and social justice is a great challenge for patient-based medical research.MethodsWe therefore conducted two questionnaire-based surveys among North-German outpatients (n = 650) to determine their attitude towards data-donation for medical research, implemented as an opt-out-process.ResultsWe observed a high level of acceptance (75.0%), the most powerful predictor of a positive attitude towards data-donation was the conviction that every citizen has a duty to contribute to the improvement of medical research (> 80% of participants approving data-donation). Interestingly, patients distinguished sharply between research inside and outside the EU, despite a general awareness that universities and public research institutions cooperate with commercial companies, willingness to allow use of donated data by the latter was very low (7.1% to 29.1%, depending upon location of company). The most popular measures among interviewees to counteract reservations against commercial data-use were regulation by law (61.4%), stipulating in the process that data are not sold or resold (84.6%). A majority requested control of both the use (46.8%) and the protection (41.5%) of the data by independent bodies.ConclusionsIn conclusion, data-donation for medical research, implemented as a combination of legal entitlement and easy-to-exercise-right to opt-out, was found to be widely supported by German patients and therefore warrants further consideration for a transposition into national law.

Project description:BACKGROUND:Public awareness and engagement are among the main prerequisites for protecting the rights of research participants and for successful and sustainable functioning of research biobanks. The aim of our study was to analyse public awareness and attitudes towards research biobanks in Latvia, and to compare these data with the results of the 2010 Eurobarometer study. We also analysed the influence of awareness and attitudes towards biobanks on willingness to participate in biobank studies and on preferred type of informed consent. METHODS:We developed a 12-question survey repeating seven questions about biobanks from the 2010 Eurobarometer questionnaire and adding five others. After describing the study variables, we performed a two-stage analysis of the results. In the first stage we analysed differences between the answers from 2010 and 2019 and conducted univariate analyses of relationships among particular variables, and between those variables and the socio-demographic characteristics of participants. In the second stage we investigated multivariable associations of willingness to participate and type of consent with awareness, trust and the socio-economic characteristics of participants. RESULTS:According to our study, the general public in Latvia is still not well informed about research biobanks. Fewer respondents have heard about research biobanks than in 2010. At the same time, the number of respondents who are willing to donate biological samples and personal data to a biobank has increased, e.g. the number of respondents who would definitely or probably be willing to provide information about themselves has increased from 25.8.% to 40.7 since 2010. Overall, concerns about the donation of different types of biological samples and data to a biobank have slightly decreased. CONCLUSIONS:Public awareness about biobanks is important for their sustainability. It needs to be increased not only by traditional methods of informing the public, but also by more innovative and participatory approaches, e.g. by citizen science projects. There is a need to strengthen the public visibility and trustworthiness of ethics committees in Latvia in the field of biobanking.

Project description:BACKGROUND:Kidney cancer is often asymptomatic, leading to proposals for a screening programme. The views of the public towards introducing a new screening programme for kidney cancer are unknown. The aim of this study was to explore attitudes towards kidney cancer screening and factors influencing intention to attend a future screening programme. METHODS:We conducted an online population-based survey of 1021 adults aged 45-77 years. The main outcome measure was intention to attend four possible screening tests (urine, blood, ultrasound scan, low-dose CT) as well as extended low-dose CT scans within lung cancer screening programmes. We used multivariable regression to examine the association between intention and each screening test. RESULTS:Most participants stated that they would be 'very likely' or 'likely' to undergo each of the screening tests [urine test: n = 961 (94.1%); blood test: n = 922 (90.3%); ultrasound: n = 914 (89.5%); low-dose CT: n = 804 (78.8%); lung CT: n = 962 (95.2%)]. Greater intention to attend was associated with higher general cancer worry and less perceived burden/inconvenience about the screening tests. Less worry about the screening test was also associated with higher intention to attend, but only in those with low general cancer worry (cancer worry scale ? 5). Compared with intention to take up screening with a urine test, participants were half as likely to report that they intended to undergo blood [OR 0.56 (0.43-0.73)] or ultrasound [OR 0.50 (0.38-0.67)] testing, and half as likely again to report that they intended to take part in a screening programme featuring a low dose CT scan for kidney cancer screening alone [OR 0.19 (0.14-0.27)]. CONCLUSION:Participants in this study expressed high levels of intention to accept an invitation to screening for kidney cancer, both within a kidney cancer specific screening programme and in conjunction with lung cancer screening. The choice of screening test is likely to influence uptake. Together these findings support on-going research into kidney cancer screening tests and the potential for combining kidney cancer screening with existing or new screening programmes.

Dataset Information

Public attitudes towards novel reproductive technologies: a citizens' jury on mitochondrial donation.

Publications

Public attitudes towards novel reproductive technologies: a citizens' jury on mitochondrial donation.

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