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There are different forms of scientific malpractice including research misconduct, questionable research practices, misuse, and dual use of research. These practices undermine trustworthiness of scientific community. The preservation and promotion of trustworthiness of researchers and scientific institutions has been a long-term concern of different stakeholders. Trust in science is not only important for research and development but also for the well-being of the society, especially in times of COVID-19 pandemic. To build trustworthiness of scientific community it is important to study and address these scientific malpractices in its complexity. Ignorance studies can be an additional tool used within bioethics to understand these problems. Scholars of ignorance studies focus on ignorance as an object of study. They identified three different types of ignorance: deliberately constructed ignorance, natural ignorance, and virtuous ignorance. This paper explains every type of ignorance by linking them with examples from the bioethical field. The objective of this paper is to illustrate how ignorance studies can serve as an additional tool for bioethics to identify and analyse different forms of scientific malpractice as means of addressing the fundamental problem of trust and trustworthiness of scientific community and institutions.
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Between 1965 and 1983, Singapore instituted diverse reproductive policies, such as liberalization of abortion, voluntary sterilization, and family planning. These policies were partly motivated by public goals such as fighting overpopulation and maintaining genotypic intelligence. Between 1983 and 1987, Singapore launched a slew of policies aimed at evening out “lop-sided” reproductive patterns by increasing graduate fertility and decreasing that of the uneducated. These policies included awareness-raising, a graduate matchmaking program, differentiated financial incentives, and priority school access for the children of graduate mothers with three or more offspring. An examination of Singapore parliamentary debates shows that the Singapore government was willing to either challenge or reify particular traditional Asian familial and gender norms depending on whether this contributed to perceived public goods, an approach one scholar has called “strategic (in)egalitarianism.” Parliamentary opponents of these policies generally couched their arguments in liberal or egalitarian terms. The government’s reproductive policies for 1983-1987, with their emphasis on natalism, family focus, meritocratic elitism, and opposition to individualism, arguably reflected a selective Confucianism.
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According to GLOBOCAN, prostate cancer (PCa) is the most frequently diagnosed cancer among men. It is a disease with high heritability and significant variations and incidence rates across all ancestry populations. For this reason, genetic factors have been considered to play an essential role in its incidence rates among populations. Nevertheless, the knowledge of the susceptibility loci in PCa is biased because these findings were obtained in individuals belonging to a very restricted number of ancestries and have not been replicated or reported in populations with a significant incidence of this type of cancer. It is essential to study the barriers to diversity and inclusion of populations with a lack of representation in genomic research, its ethical implications, and their impact on a prevalent disease such as PCa.
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ACHTERGROND - Het belang van het uitwisselen van onderzoeksgegevens wordt meer dan ooit benadrukt. Om gegevensuitwisseling te faciliteren worden data sharing platformen opgesteld. Burgers en patiënten zouden hun gezondheidsgegevens delen maar kunnen barrières ervaren. ONDERZOEKSVRAAG – Het delen van gezondheidsgegevens wordt aangemoedigd maar de vraag rijst of deelnemers vertrouwen hebben in specifieke entiteiten en of ze bereid zouden zijn om gegevens te delen. Verder wordt onderzocht of er een verband bestaat tussen vertrouwen in bepaalde partijen en bereidheid om gezondheidsgegevens te delen met deze. METHODE – Er werd een survey afgenomen om te onderzoeken wat de opinie van deelnemers was over vertrouwen en de bereidheid om hun gezondheidsgegevens te delen. De datacollectie vond plaats in twee officina apotheken in Vlaanderen in de zomer en het najaar van 2021. Men kon deelnemen via een QR-code, via de computer of op papier. De data werden geanalyseerd door middel van descriptieve statistiek en statistische testen. De volgende statistische testen werden uitgevoerd wanneer ze relevant bleken: Kruskal Wallis-, Man-Whitney U-, Scheffé- en mediaan test. RESULTAAT – Uit de analyse bleek dat de volgende factoren een impact hebben op de mate van vertrouwen: de leeftijd, werksituatie en het hoogst behaalde diploma. De bereidheid tot delen wordt beïnvloed door de leeftijd, het hoogst behaalde diploma en de gezondheidstoestand. Tenslotte bestaat er een positief monotoon verband tussen het hebben van vertrouwen en de bereidheid tot het delen van gezondheidsgegevens. Het sterkste verband (r = 0.7177) bestond tussen de mate van vertrouwen in en de bereidheid tot het delen met Belgische overheden. Het meeste vertrouwen bestaat in wetenschappers uit het onderzoeksteam dat hun gegevens heeft verzameld en Belgische universiteiten. Het minste vertrouwen bestaat in commerciële bedrijven die niet actief zijn in de gezondheidszorgsector of onderzoek. De bereidheid tot het delen van gegevens volgde de antwoorden van de mate van vertrouwen. CONCLUSIE – Bepaalde sociodemografische factoren hebben een impact op de mate van vertrouwen in en de bereidheid tot het delen van gezondheidsgegevens. Dezelfde survey zou in de toekomst voorgelegd kunnen worden aan mensen uit cohorten zodat uitvoerders van patiëntenplatformen met de verschillende opinies rekening kunnen houden.
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This PhD thesis is aimed at exploring how incentives and science policy measures could stimulate data sharing of cohort studies by researchers.
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Reproductive genetic carrier screening (RGCS) allows to identify couples with an increased likelihood of conceiving a child with an autosomal recessive (AR) or X-linked condition. Information gained through RGCS can be used to make reproductive choices. The general objective of this research project was to study informed choice and reproductive decision-making with regard to RGCS for expanded test panels of monogenic conditions. Specific objectives were (1) to synthesize evidence from empirical studies that assess the interest in RGCS among individuals and couples in the general population, (2) to gain insights into the potential impact of RGCS on the subsequent reproductive decision-making of at-risk couples, (3) to assess the perceived susceptibility of being a carrier/conceiving a child with a hereditary condition, the acceptability of offering RGCS, the intention to participate in RGCS, knowledge of RGCS, attitudes towards RGCS and preferences for the practical organization of a RGCS offer amongst men and women (of reproductive age) in Flanders (Belgium), (4) to implement and evaluate a RGCS offer in a reproductive context among non-pregnant couples. To meet objective (1) and (2) we performed two systematic reviews of empirical literature following the PRISMA guidelines. In line with objective (3), this dissertation reports the findings of two cross-sectional survey studies on the perspectives of reproductive-aged women and men with regard to RGCS. Finally, we performed a longitudinal survey through a gynecologist practice in Flanders (Belgium) (a) to study the interest of non-pregnant couples in a preconception RGCS offer, (b) to assess the extent to which couples make informed decisions regarding participation in preconception RGCS and (c) to assess the level of satisfaction, anxiety, long-term knowledge retention, psychosocial & counseling related aspects among couples who choose to have reproductive genetic carrier screening. Our results show that there may be discrepancies between prospective parents' reported intentions to undergo RGCS and their actual uptake, particularly during the preconception period. Most couples with an increased likelihood of conceiving a child with an AR or X-linked condition chose reproductive options to reduce the risk of a child affected. Most of our study participants showed positive attitudes towards RGCS and found it acceptable to offer RGCS to couples planning a family. Self-reported intention to have RGCS didn't always translate into actual test-uptake. Within our study where the Belgian RGCS test was offered free of charge to non-pregnant couples from the general population, 53% of women (meeting our study inclusion criteria) who initially showed the intention to have RGCS decided to accept the offer. We observed high rates of informed choice among non-pregnant couples who accepted a free RGCS offer after they were offered up to 30 minutes of pre-test counselling. We recommend that RGCS should ideally be implemented through a tailored implementation strategy whereby individual needs and preferences can be taken into account. Future research should try to assess if high levels of informed choice can also be achieved outside a controlled research context with more limited resources.
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