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1.
Semin Cancer Biol ; 84: 255-262, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-34129914

RESUMO

RATIONALE: In 2016, Belgium launched the Next Generation Sequencing (NGS) Roadbook, consisting in 10 Actions, across the health care system, to facilitate the uptake of NGS in routine clinical practice. We compiled feedback on deployment of the NGS Roadbook from governmental stakeholders and beneficiaries: health policy makers, insurance providers, pathologists, geneticists, and oncologists. MAIN FINDINGS: The Roadbook ensured the establishment of a Commission on Personalized Medicine and NGS testing guidelines. A national benchmarking trial ensued, and 10 networks of hospitals and laboratories adopted a reimbursement convention with the Belgian Health Insurance Agency. The Healthdata.be platform centralizes the collection of NGS metrics, and citizens were consulted on their views about NGS and genomics. CONCLUSION: The Roadbook facilitated the implementation of NGS in routine (hemato-)oncology care in Belgium. Some challenges remain linked to data sharing and access by a wider range of stakeholders. Next steps include continuous monitoring of health outcomes and the budgetary impact.


Assuntos
Neoplasias , Medicina de Precisão , Bélgica , Sequenciamento de Nucleotídeos em Larga Escala , Humanos , Oncologia , Neoplasias/genética , Neoplasias/terapia
2.
Health Expect ; 24(2): 468-477, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33453142

RESUMO

BACKGROUND: The development of large data sets, including genomic data, coupled with rapid advances in personalized medicine where citizens increasingly face complex choices about the use of their genomic information implies that citizens are essential stakeholders in genomics. They should be engaged in the ethical, legal and societal issues to produce a framework that fosters trust and allows them to guide the technology based on their values. OBJECTIVE: This article highlights that citizens' conceptions of the human genome inform about and make sense of their main values regarding the use of genomic information, which is critical for policymakers, experts and stakeholders to understand to maintain the public support in genomics. METHOD: Through an inductive thematic approach, we reanalysed data collected for the Belgian citizen forum, which aimed to produce recommendations for the Ministry of Public Health and other stakeholders. RESULTS: Citizens expressed four conceptions of the genome that determined which uses of genomic information they supported: the most intimate part of individuals; 'I am more than my genome'; the individual's property vs the common good; and uncertainty and fear. CONCLUSION: Diversity in their conceptions reveals remaining conflicts of values among citizens, mainly regarding a conception of the genome as an individual property or a common good. However, despite differing conceptions, shared values emerged such as solidarity, privacy, no genetic discrimination and the right to an open future, where individual and common interests coexist. PATIENT OR PUBLIC CONTRIBUTION: The panel of the citizen forum consisted of 32 citizens.


Assuntos
Genômica , Confiança , Humanos , Medicina de Precisão , Privacidade , Justiça Social
3.
Eur J Pediatr ; 177(7): 1003-1008, 2018 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-29679141

RESUMO

There is a general consensus about the underlying theoretical ethical principles that ground the practice of pediatric clinical trials: scientific necessity, good risk/benefit ratio, minimized burden, and parental consent/child assent. However, these principles are so broadly construed that it is not always clear how they should be applied in clinical practice. We conducted a qualitative study at Ghent University Hospital and the hospital of the Dutch-speaking university of Brussels on how researchers weigh ethical principles, assess the risk/benefit balance, estimate patient experience, and experience informed consent procedures in pediatric drug studies. Based on our assessment of the burden and risk versus benefit ratio in 62 pediatric drug research protocols, we selected 21 studies for further study to maximize diversity. Twenty-seven researchers (17 physicians, 10 study nurses) completed a qualitative survey about their study. We compared their responses to our assessments. The risk benefit assessment of our participants about their own research projects resembled our assessment almost perfectly. Assessing burden appeared to be more subjective. The researchers were confident in their ability to obtain valid consent. However, we question whether this confidence is warranted. CONCLUSION: We argue for constant ethical reflexivity in pediatric clinical trials, because broad ethical principles are not always easy to apply to specific situations. What is Known: • Several international guidelines and a large body of scientific literature indicate a broad consensus about the basic ethical framework for pediatric clinical trials, based on risk benefit assessment and respect for autonomy. • Little is known about how researchers implement these broad principles in practice. What is New: • Researchers' risk/benefit assessments about their own studies resembled the assessment of neutral peers, assessing burden was more subjective. • Researchers were very confident in their ability to obtain valid informed consent.


Assuntos
Ensaios Clínicos como Assunto/ética , Ética em Pesquisa , Pesquisadores/ética , Adolescente , Bélgica , Criança , Pré-Escolar , Hospitais Pediátricos , Hospitais Universitários , Humanos , Lactente , Consentimento Livre e Esclarecido/ética , Pesquisa Qualitativa , Medição de Risco/métodos
4.
Arch Public Health ; 82(Suppl 1): 133, 2024 Aug 26.
Artigo em Inglês | MEDLINE | ID: mdl-39187893

RESUMO

Rights, preferences, needs and expectations of patients and citizens can only be respected and addressed if they are well understood. As such, a continuous, systematic and formalised dialogue between patients, citizens and policy makers is required to ensure ethical and socially appropriate cancer prevention, diagnostics, treatment and care. Relying on donations and project-based funding is not a sustainable way to ensure patient involvement and representativeness in policy. Patient organizations need long term, structural support to fulfil their role as patient representatives and support network in order to deliver the best possible service and to play their role as a professional representative of their disease-specific community. Inequalities can only be tackled if they are properly identified. This requires the definition of appropriate determinants fit for (inter)national comparison and extension and linkage of good quality data registries for cancer that allow the monitoring these inequalities.

5.
Hum Reprod ; 28(4): 1013-22, 2013 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-23335612

RESUMO

STUDY QUESTION: What information is shared on Dutch internet forums with regard to infertility treatment in Belgium? SUMMARY ANSWER: The online discussion mainly regards medical treatments, feelings and experiences, and financial implications. The general tone of the discussion on the forums about fertility treatment in Belgium is that Belgian clinics offer better quality of care. WHAT IS KNOWN ALREADY: The internet is the most important source of information for cross-border patients. Many Dutch patients visit Belgian clinics for infertility treatment. STUDY DESIGN, SIZE, DURATION: This study comprised an inductive thematic analysis of eight Dutch internet forums about infertility. PARTICIPANTS/MATERIALS, SETTING, METHODS: All the threads that were active in a 15-month period (October 2010-December 2011) were retrieved and checked for relevance. This resulted in 77 threads containing 1813 posts that were used for thematic analysis. MAIN RESULTS AND THE ROLE OF CHANCE: Eight themes emerged after data analysis: medical expertise and testing, feelings and experiences, costs, trying out different clinics, travel and waiting times, treatments in the Netherlands, cooperation between clinics/physicians and laws and regulations. Our analysis of shared patient experiences indicates that patients identify respect for the person behind the patient as the fundamental reason why quality of care is higher in Belgium. They define this respect as active involvement in the medical decision-making process, which is considered a form of patient-centred care. LIMITATIONS, REASONS FOR CAUTION: The data from internet forums are not representative of the experience of Dutch IVF patients in Belgium. We are presenting a thematic analysis of information that circulates on the web, not making statements about IVF treatment in Belgium or the Netherlands. WIDER IMPLICATIONS OF THE FINDINGS: This is the first study on what information (future) cross-border patients are likely to find when they look for information online. STUDY FUNDING/COMPETING INTEREST(S): W.V.H. has a Ph.D. grant and V.P. holds a Postdoctoral Mandate by the Flemish Foundation for Scientific Research (FWO-Vlaanderen). G.P. is supported by a full-time stipend at Ghent University. There are no competing interests. TRIAL REGISTRATION NUMBER: N/A.


Assuntos
Fertilização in vitro/psicologia , Internet , Satisfação do Paciente , Qualidade da Assistência à Saúde , Bélgica , Fertilização in vitro/legislação & jurisprudência , Disseminação de Informação , Turismo Médico/psicologia , Países Baixos , Medicina Reprodutiva/legislação & jurisprudência
6.
Arch Public Health ; 81(1): 168, 2023 Sep 12.
Artigo em Inglês | MEDLINE | ID: mdl-37700330

RESUMO

The European Health Data Space (EHDS) aims to make the primary use of health data for healthcare provision more continuous, effective, and (cost) efficient. Moreover, it pursues to facilitate the secondary use of health data for purposes such as research, innovation, and policy making. In the context of secondary use, the EHDS legislative proposal (published on 3 May 2022) argues that Member States should develop Health Data Access Bodies (HDABs) whose responsibilities include facilitating the secondary use of health data, issuing data permits, and implementing high levels of accountability and security. In Belgium, the setup in 2023 of a federal Health Data Agency (HDA) that is developing and implementing a policy strategy and framework for the secondary use of health data, aligns well with the responsibilities set out for HDABs. Even though the EHDS aspires the empowerment of citizens, for instance by giving them access to their health data and control over the healthcare professionals who can consult these data, this call for citizen empowerment resonates less loudly regarding secondary use. We think, however, that elaborating and implementing citizen engagement in the domain of secondary use is required to align secondary use with socio-ethical sensitivities, preferences, and values and to provide social legitimacy and ethical solidity to a health data governance system. When implementing the EHDS legislation on a national level, the Belgian HDA and the future HDABs in general might be excellent opportunities to realise this ambition of citizen involvement and empowerment. More specifically, we urge HDABs, firstly, to expand the field of citizen engagement towards the domain of secondary use and, secondly, to respect and facilitate the diversity of citizen engagement. This would offer citizens genuine, continuous and diversified possibilities of involvement and co-creation concerning the development of a solid ethical governance framework for health data.

7.
Humanit Soc Sci Commun ; 10(1): 83, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36909259

RESUMO

Since genomics is becoming commonplace in healthcare for the diagnosis, treatment, and prevention, the prospect of generating a genomic passport for all citizens is gaining traction. While this would have many advantages, it raises ethical issues requiring societal debate alongside academic reflection. Hence, Sciensano-the Belgian scientific Institute of Public Health-organised an online citizen engagement on genomic information usage, including a question on a genomic passport for all. The inductive thematic analysis of participants' contributions highlighted vulnerability as a fundamental concern, while this has not received sufficient attention so far in genomics. Participants expressed their vulnerability in two ways. First, the genomic passport would inform them about their ontological vulnerability. By revealing their constitutional weaknesses (predisposition to diseases), it reminds them that everyone is unavoidably and perennially at risk of being harmed. Second, the misuse of the genomic passport can add situational vulnerabilities (e.g., discrimination causing psychological and economic harm). Moreover, the fundamental uncertainty in genomics-how will such sensitive information be used, and how will the science evolve?-exacerbates these vulnerabilities. This article ends with recommendations to alleviate these vulnerabilities in genomics now and in the future in which the genomic passport may become a reality.

8.
Arch Public Health ; 81(1): 198, 2023 Nov 15.
Artigo em Inglês | MEDLINE | ID: mdl-37968754

RESUMO

In recent years, the linkage of survey data to health administrative data has increased. This offers new opportunities for research into the use of health services and public health. Building on the HISlink use case, the linkage of Belgian Health Interview Survey (BHIS) data and Belgian Compulsory Health Insurance (BCHI) data, this paper provides an overview of the practical implementation of linking data, the outcomes in terms of a linked dataset and of the studies conducted as well as the lessons learned and recommendations for future links.Individual BHIS 2013 and 2018 data was linked to BCHI data using the national register number. The overall linkage rate was 92.3% and 94.2% for HISlink 2013 and HISlink 2018, respectively. Linked BHIS-BCHI data were used in validation studies (e.g. self-reported breast cancer screening; chronic diseases, polypharmacy), in policy-driven research (e.g., mediation effect of health literacy in the relationship between socioeconomic status and health related outcomes, and in longitudinal study (e.g. identifying predictors of nursing home admission among older BHIS participants). The linkage of both data sources combines their strengths but does not overcome all weaknesses.The availability of a national register number was an asset for HISlink. Policy-makers and researchers must take initiatives to find a better balance between the right to privacy of respondents and society's right to evidence-based information to improve health. Researchers should be aware that the procedures necessary to implement a link may have an impact on the timeliness of their research. Although some aspects of HISlink are specific to the Belgian context, we believe that some lessons learned are useful in an international context, especially for other European Union member states that collect similar data.

9.
Reprod Biomed Online ; 25(7): 665-9, 2012 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-23063819

RESUMO

There is a high degree of legal diversity within Europe concerning medically assisted reproduction. This is in direct opposition to the project of harmonization of the European institutions. This paper takes a closer look at the different national interpretations of the European Convention on Human Rights with regard to gamete donation. In the case of S.H. and Others v. Austria, the European Court of Human Rights originally condemned the prohibitions on egg donation and sperm donation for the purpose of IVF. The court judged the law to be incoherent and disproportionate. This decision was recently reversed on appeal based on the margin of appreciation doctrine. This paper critically reviews the judgments of the European Court of Human Rights and analyses what this case means for the future of legislation on medically assisted reproduction in Europe. It is concluded that legal diversity and cross-border reproductive care will persist and that the court failed to protect European patients from arbitrary interference with their right to procreation.


Assuntos
Doação Dirigida de Tecido/ética , Doação Dirigida de Tecido/legislação & jurisprudência , Análise Ética , Direitos Humanos/legislação & jurisprudência , Julgamento/ética , Áustria , Europa (Continente) , Humanos , Técnicas de Reprodução Assistida/ética , Técnicas de Reprodução Assistida/legislação & jurisprudência
10.
Reprod Biomed Online ; 23(5): 546-54, 2011 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-21955486

RESUMO

Since the development of assisted reproduction technologies, there has been discussion on which people should have access to these technologies and which treatments and techniques are morally acceptable. However, national legislation can no longer determine what citizens do. Some countries react to their citizens going abroad to evade restrictions by implementing even more restrictive laws. Turkey has recently become the first state to ban reproductive travel in pursuit of donor gametes. Several states in Australia have enacted or are considering laws that prohibit international commercial surrogacy. This article investigates the consistency and morality of several state reactions to cross-border reproductive care (CBRC), including extraterritorial regulation. The only widespread existing extraterritorial regulation of private life concerns female genital cutting (FGC), sex with children and (largely in the past) abortion. This discussion develops an analogy with these cross-border crimes to evaluate the morality of similar legislation in cases of CBRC. The dissimilarity in these analogies shows that extraterritoriality is a radical position that is generally inappropriate in the case of CBRC. Subsequently, several potential state reactions to CBRC for law evasion are considered. It is concluded that legislation of CBRC should be modest, tolerant and nuanced.


Assuntos
Regulamentação Governamental , Internacionalidade , Turismo Médico/legislação & jurisprudência , Técnicas de Reprodução Assistida/ética , Técnicas de Reprodução Assistida/legislação & jurisprudência , Comércio , Feminino , Humanos
11.
Am J Bioeth ; 16(7): 54-5, 2016 07.
Artigo em Inglês | MEDLINE | ID: mdl-27292854
12.
Public Health Genomics ; 24(3-4): 149-159, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33951658

RESUMO

INTRODUCTION: Genomics is increasingly being implemented in the society. To fully realise this implementation, citizens should be consulted about their perspectives on genomics and its associated ethical, legal, and social issues (ELSI) to enable them to co-create with experts a society-supported framework in genomics. METHODS: A Belgian online DNA debate was organised, where 1,127 citizens contributed to its deliberative platform. RESULTS: Contributors expressed a dual attitude towards the societal use of genomic information throughout 5 main themes. Firstly, contributors considered DNA to have a significant but nondeterministic impact on identity. The second theme describes how genomic information may guide people's behaviour but has unfavourable effects such as psychological distress. The third theme covers the tension between a genomics-based responsibility and the rejection of genetic discrimination. The fourth theme depicts how genomic information may be useful for the common good and society at large but how, nevertheless, it should be people's free choice to use this information. In the fifth theme, contributors expressed both willingness to share their data and caution towards the harm and abuses this may engender. Finally, contributors formulated some recommendations for the responsible implementation of genomics. DISCUSSION AND CONCLUSION: The attitude of contributors towards the societal use of genomic information and its ELSI aligns with a soft precautionary approach, in which prudence and the weighing of different values should result in protective measures against potential risks and harms. Further societal implementation of genomics should include these values and concerns.


Assuntos
Genômica , Princípios Morais , Bélgica , DNA , Humanos
13.
Phys Ther ; 101(1)2021 01 04.
Artigo em Inglês | MEDLINE | ID: mdl-32949123

RESUMO

OBJECTIVE: Persistent low back pain (PLBP) is a common and costly health problem worldwide. Better strategies to manage it are required. The purpose of this study was to longitudinally evaluate absenteeism, pain, and disability in nurses with PLBP following a cognitive functional therapy (CFT) intervention. METHODS: In this case series pilot study, 33 eligible nurses with PLBP were recruited. During the baseline phase (phase A; no intervention), outcome measures were collected on 2 occasions 6 months apart (A1 and A2). During phase B, participants received an individualized CFT intervention for 14 weeks. During phase C (no intervention), outcomes were measured immediately after the intervention, as well as 3, 6, 9, 12, and 36 months after the intervention (secondary outcomes only until 12 months). LBP-related work absenteeism, pain intensity (numerical pain rating scale) and disability (Oswestry Disability Index) were the primary outcomes. Health care seeking, a range of psychological and lifestyle variables, and global perceived effect were secondary outcomes. RESULTS: Days of absenteeism due to LBP were significantly reduced in the first and second calendar years after the CFT intervention but not the third and fourth. Disability was significantly reduced immediately after (-4.4; 95% CI = -6.5 to -2.2) and at 3 months (-4.3; 95% CI = -6.6 to -2.0), 9 months (-6.0; 95% CI = -8.1 to -3.9), and 12 months (-4.9; 95% CI = -7.0 to -2.8) after the intervention. Pain was significantly reduced immediately after (-1.2; 95% CI = -1.7 to -0.8) and at 3 months (-1.5; 95% CI = -2.0 to -0.9), 9 months (-1.1; 95% CI = -1.9 to -0.3), and 12 months (-0.9; 95% CI = -1.5 to -0.2) after the intervention. Total health care seeking (consults and proportion of participants) was significantly reduced after the intervention. All psychosocial variables, except for 1, demonstrated significant improvements at all follow-up assessments. CONCLUSIONS: This case series pilot study demonstrated significant reductions in LBP-related absenteeism, pain intensity, disability, health care seeking, and several psychological and lifestyle behaviors until the 1-year follow-up among nurses with PLBP following an individualized CFT intervention. Further evaluation of the efficacy of CFT in high-quality randomized clinical trials among nurses is recommended.


Assuntos
Absenteísmo , Dor Crônica/terapia , Terapia Cognitivo-Comportamental/métodos , Exercício Físico , Dor Lombar/terapia , Enfermeiras e Enfermeiros , Traumatismos Ocupacionais/terapia , Adulto , Avaliação da Deficiência , Feminino , Seguimentos , Humanos , Pessoa de Meia-Idade , Saúde Ocupacional , Medição da Dor , Projetos Piloto
14.
Int J Nurs Stud ; 77: 222-231, 2018 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-29121556

RESUMO

OBJECTIVES: To investigate the efficacy of interventions for the prevention and treatment of low back pain in nurses. DESIGN: Systematic review. DATA SOURCES: The review was registered on the PROSPERO database (CRD42015026941) and followed the PRISMA statement guidelines. A two phase approach was used. In phase one, all randomised controlled trials included in the systematic review of Dawson et al. (2007) which reviewed interventions for low back pain in nurses until 2004 were selected. In phase two, relevant randomised controlled trials and cluster randomised controlled trials published from 2004 until December 2015 were identified by an electronic search of nine databases (Embase, CINAHL, SPORTDiscus, PsycARTICLES, Cochrane Library, Web of Science, PEDro, Scopus and MEDLINE). To be eligible, trials had to examine the efficacy of interventions either for the prevention or treatment of low back pain in nurses. Primary outcomes of interest were any measure of pain and/or disability. REVIEW METHODS: Three reviewers independently assessed eligibility and two reviewers independently conducted a risk of bias assessment (Cochrane Back and Neck Group). RESULTS: Four studies were retrieved from phase one. In phase two, 15,628 titles and abstracts were scanned. From these, 150 full-text studies were retrieved and ten were eligible. Fourteen studies (four from phase one, ten from phase two) were eligible for risk of bias assessment. The included trials were highly heterogeneous, differing in pain and disability outcome measures, types of intervention, types of control group and follow-up durations. Only four of the included studies (n=644 subjects) had a low risk of bias (≥6/12). Manual handling training and stress management in isolation were not effective in nurses with and without low back pain (risk of bias, 7/12, n=210); the addition of a stretching exercise intervention was better than only performing usual activities (risk of bias, 6/12, n=127); combining manual handling training and back school was better than passive physiotherapy (risk of bias, 7/12, n=124); and a multidimensional intervention (risk of bias, 7/12, n=183) was not superior to a general exercise program in reducing low back pain in nurses. CONCLUSIONS: Only four relevant low risk of bias randomised controlled trials were found. At present there is no strong evidence of efficacy for any intervention in preventing or treating low back pain in nurses. Additional high quality randomised controlled trials are required. It may be worth exploring the efficacy of more individualised multidimensional interventions for low back pain in the nursing population.


Assuntos
Dor Lombar/terapia , Enfermeiras e Enfermeiros , Doenças Profissionais/terapia , Humanos , Dor Lombar/prevenção & controle , Doenças Profissionais/prevenção & controle , Resultado do Tratamento
15.
Arch Public Health ; 76: 49, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30202522

RESUMO

In the field of oncology research, next-generation sequencing has contributed significantly to the discovery of DNA mutations associated with diagnosis and prognosis. It also aids in the development of targeted therapies to specific mutations and the rise of personalized medicine. As part of molecular diagnostics in cancer patients, analysis by next-generation sequencing is becoming part of routine clinical practice. The introduction of this complex technology in a healthcare system comes with multiple challenges and requires a clear action plan. Such an action plan, as outlined in this paper, was developed in Belgium and includes steps in ensuring the quality and indications of NGS testing, installing data registration and tackling ethical issues. A final step is to perform a pilot study to control the access, quality, harmonization and expertise in DNA testing. This action plan can serve as a guide for similar initiatives by other countries to facilitate NGS implementation in clinical practice.

16.
Eur J Obstet Gynecol Reprod Biol ; 202: 101-5, 2016 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-26372639

RESUMO

There are fundamental differences between countries with regard to legislation on assisted reproduction. Many infertility patients are looking to evade the law of their own country and make use of reproductive services abroad. The role of the local physician in cross-border reproductive care for law evasion has been characterized as "channeling local patients to foreign medical establishments" and "against the spirit and essence of the law". The logical view is that by supporting CBRC for law evasion, physicians are essentially supporting immoral behavior. We will tackle this position on two levels. First, we will argue that governments should generally be tolerant toward people with different positions on assisted reproduction. Second, we will show that contributing to cross-border reproductive care for law evasion is not necessarily immoral, because the prima facie wrongness of complicity in law evasion can be outweighed by the fact that physicians should act in the best interest of the patient. Several countries have tried to prevent local physicians from helping patients to make use of reproductive services abroad, but they should rather leave it up to the individual physicians to decide whether or not to support a particular patient.


Assuntos
Infertilidade/terapia , Turismo Médico/legislação & jurisprudência , Técnicas de Reprodução Assistida/legislação & jurisprudência , Feminino , Humanos
17.
Soc Sci Med ; 124: 391-7, 2015 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-25239009

RESUMO

One consequence of the legal diversity in Europe is that legal restrictions on treatments can be evaded by going abroad. Many French lesbian couples and single women are crossing the border to Belgium because they are denied access to treatments with donor sperm at home. This is the first qualitative research study into the experiences and moral perspectives of these women. Between June 2012 and May 2013, 11 lesbian couples and 2 single women were recruited at the department of reproductive medicine at Ghent University Hospital. The data from the semi-structured interviews was analysed using inductive thematic analysis. The results show that these women face several additional challenges to the already difficult process of cross-border treatment. Before they can start the treatment, they can only obtain information from the internet or from stories of friends who also went abroad for treatment with donor sperm. During the treatment, they need to find local clinics or physicians to monitor their cycle. Several women managed to game the French system to ensure partial reimbursement for their treatment when they were successful in finding a physician who was willing to prescribe drugs and perform tests. Most women had difficulties justifying their absence from work. In general these women felt that they were discriminated against and that their rights were not protected because of who they are. In that regard, the lack of legal recognition of the genetically unrelated partner in their country was particularly hard to cope with for the lesbian couples. These women have to develop many different strategies to deal with the difficulties they face during cross-border reproductive care. It is concluded that it is very important that they find a physician who is willing to support them in their 'baby project'.


Assuntos
Inseminação Artificial/métodos , Inseminação Artificial/psicologia , Turismo Médico , Bancos de Esperma , Absenteísmo , Adulto , Bélgica/epidemiologia , Informação de Saúde ao Consumidor/métodos , Feminino , França/etnologia , Homossexualidade Feminina , Direitos Humanos , Humanos , Inseminação Artificial/legislação & jurisprudência , Masculino , Pesquisa Qualitativa
18.
Man Ther ; 18(6): 526-32, 2013 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-23756034

RESUMO

Studies examining repositioning error (RE) in non-specific chronic low back pain (NSCLBP) demonstrate contradictory results, with most studies not correlating RE deficits with measures of pain, disability or fear. This study examined if RE deficits exist among a subgroup of patients with NSCLBP whose symptoms are provoked by flexion, and how such deficits relate to measures of pain, disability, fear-avoidance and kinesiophobia. 15 patients with NSCLBP were matched (age, gender, and body mass index) with 15 painfree participants. Lumbo-pelvic RE, pain, functional disability, fear-avoidance and kinesiophobia were evaluated. Participants were asked to reproduce a target position (neutral lumbo-pelvic posture) after 5 s of slump sitting. RE in each group was compared by evaluating constant error (CE), absolute error (AE) and variable error (VE). Both AE (p = 0.002) and CE (p = 0.006) were significantly larger in the NSCLBP group, unlike VE (p = 0.165) which did not differ between the groups. There were significant, moderate correlations in the NSCLBP group between AE and functional disability (r = 0.601, p = 0.018), and between CE and fear-avoidance (r = -0.577, p = 0.0024), but all other correlations were weak (r < 0.337, rs < 0.377) or non-significant (p > 0.05). The results demonstrate increased lumbo-pelvic RE in a subgroup of NSCLBP patients, with the selected subgroup undershooting the target position. Overall, RE was only weakly to moderately correlated with measures of pain, disability or fear. The deficits observed are consistent with findings of altered motor control in patients with NSCLBP. The mechanisms underlying these RE deficits, and the most effective method of addressing these deficits, require further study.


Assuntos
Dor Lombar/fisiopatologia , Região Lombossacral/fisiopatologia , Postura/fisiologia , Adulto , Estudos de Casos e Controles , Doença Crônica , Avaliação da Deficiência , Medo , Feminino , Humanos , Masculino , Medição da Dor , Inquéritos e Questionários
19.
Eur J Health Law ; 19(2): 187-200, 2012 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-22558659

RESUMO

Certain states impose restrictions on assisted reproduction because they believe such acts to be morally wrong. However, people who live in a state with restrictive legislation always have the option of going abroad to evade that law. Turkey and several states in Australia have enacted extraterritorial laws to stop forms of reproductive travelling for law evasion. Within the EU, the European Convention of Human Rights would normally remove the need for extraterritorial laws. However, because of the wide margin of appreciation allowed by the European Court of Human Rights, legal diversity on these matters persists. In the case of S.H. and Others v. Austria, moral justification, consistency and proportionality were introduced by the First Section to rule on Member States' legislation on medically assisted reproduction. The First Section mostly ruled on the effectiveness of the law, while the focus should be on the validity of the normative aim. The Grand Chamber reversed this judgement based on the margin of appreciation doctrine, using it as a pragmatic substitute for a substantial decision. In general, the E.U.'s interests of harmonization and unification are at odds with the right to national identity of individual states in areas of contested morality.


Assuntos
Turismo Médico/legislação & jurisprudência , Técnicas de Reprodução Assistida/legislação & jurisprudência , União Europeia , Humanos , Internacionalidade
20.
Man Ther ; 17(4): 312-7, 2012 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-22436688

RESUMO

The aim of this study was to examine lower lumbar kinematics in cyclists with and without non-specific chronic low back pain (NS-CLBP) during a cross-sectional cycling field study. Although LBP is a common problem among cyclists, studies investigating the causes of LBP during cycling are scarce and are mainly focussed on geometric bike-related variables. Until now no cycling field studies have investigated the relationship between maladaptive lumbar kinematics and LBP during cycling. Eight cyclists with NS-CLBP classified as having a 'Flexion Pattern' (FP) disorder and nine age- and gender-matched asymptomatic cyclists were tested. Subjects performed a 2 h outdoor cycling task on their personal race bike. Lower lumbar kinematics was measured with the BodyGuard™ monitoring system. Pain intensity during and after cycling was measured using a numerical pain rating scale. The NS-CLBP (FP) subjects were significantly more flexed at the lower lumbar spine during cycling compared to healthy controls (p = 0.018), and reported a significant increase in pain over the 2 h of cycling (p < 0.001). One-way repeated measures ANOVA revealed a significant main effect for group (p = 0.035, F = 5.546) which remained just significant when adding saddle angle as a covariate (p = 0.05, F = 4.747). The difference in posture between groups did not change over time. These findings suggest that a subgroup of cyclists with NS-CLBP (FP) demonstrate an underlying maladaptive motor control pattern resulting in greater lower lumbar flexion during cycling which is related to a significant increase in pain.


Assuntos
Ciclismo/fisiologia , Dor Lombar/diagnóstico , Vértebras Lombares/fisiopatologia , Monitorização Fisiológica/instrumentação , Postura/fisiologia , Adulto , Antropometria , Fenômenos Biomecânicos , Estudos Transversais , Humanos , Masculino , Amplitude de Movimento Articular/fisiologia , Valores de Referência , Índice de Gravidade de Doença , Tecnologia sem Fio/instrumentação , Adulto Jovem
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