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How much is a child worth? Providers' and patients' views and responses concerning ethical and policy challenges in paying for ART.

ABSTRACT: Infertility treatments remain expensive and in many countries are covered by little, if any, insurance, raising critical questions concerning how patients and providers view and make decisions regarding these challenges. In-depth semi-structured interviews of approximately 1 hour were conducted with 37 IVF providers and 10 patients (17 physicians, 10 other providers and 10 patients), and were systematically analyzed. These data suggest current insurance policies and legislation pose critical ethical and logistical challenges for both patients and providers. These individuals face multiple uncertainties about costs and insurance, related to unclear causes of fertility, treatment length, costs and outcomes, and odds that insurers will cover expenses. Insurers frequently decline to agree to reimbursement beforehand, and decide only afterwards, case-by-case, generating stress. Patients and providers thus may not be able to predict how best to allocate limited resources. Providers may advocate for patients, but are usually unsuccessful. Patients may adopt several strategies: e.g., moving/seeking treatment elsewhere, switching or feeling "stuck" in jobs because of insurance, seeking "free" medications, going into debt, or using funds intended for other purposes. Patients do not perceive and respond to resource limitations as fixed phenomena-i.e., patients do not see treatment simply as "affordable" or not. Rather, patients face quandaries of how much to keep spending-how much a child is worth-and are forced to make complex risk/benefit calculations. Couples can disagree, straining relationships. In sum, these data, the first to explore how providers and patients struggle, view, and make decisions regarding limited insurance and resources for infertility, raise several critical ethical and policy issues. These data suggest that individuals have difficulty translating profoundly life-altering, deeply personal quests for meaning and fulfillment into purely economic terms. These findings thus have important implications for future policy, practice, research, and patient and provider education.

SUBMITTER: Klitzman R

PROVIDER: S-EPMC5313146 | biostudies-literature | 2017

REPOSITORIES: biostudies-literature

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How much is a child worth? Providers' and patients' views and responses concerning ethical and policy challenges in paying for ART.

Klitzman Robert R

PloS one 20170216 2

Infertility treatments remain expensive and in many countries are covered by little, if any, insurance, raising critical questions concerning how patients and providers view and make decisions regarding these challenges. In-depth semi-structured interviews of approximately 1 hour were conducted with 37 IVF providers and 10 patients (17 physicians, 10 other providers and 10 patients), and were systematically analyzed. These data suggest current insurance policies and legislation pose critical eth ...[more]

PMID: 28207807

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Project description:Study questionHow do patients and providers perceive and make decisions about possible reductions of multi-fetal pregnancies?Summary answerPhysicians may be transferring additional embryos, assuming that patients will later undergo reduction if need be; but decisions to reduce pregnancies are difficult for patients, who may agree to undergo the procedure in advance and later renege.What is already knownImplanting more than one embryo increases the likelihood that at least one embryo will successfully lead to a child but also that the patient may end up with twins or higher-order multiple births.Study design, size, durationIn-depth interviews of ~1 h each were conducted with 37 ART providers and patients (17 physicians, 10 other health providers and 10 patients) and systematically analyzed.Participants/materials, setting, methodThe telephone interviews explored the participants' views and decisions regarding pregnancy reduction. The answers were analyzed systematically.Main results and the role of chanceProviders may be transferring additional embryos, thinking that doing so will increase the likelihood of a 'take home baby' and that the patients could undergo reductions, if need be, to avoid the risks and complications of twins or multiple births. Yet patients often appear to have difficulty confronting the prospect of fetal reduction and/or renege on prior agreements to undergo the procedure. Providers should thus be wary and exceedingly careful about these situations.Limitations, reasons for cautionThe sample size was sufficient for qualitative research designed to elucidate the issues and themes that emerge, but not for statistically analyzing how various groups may differ (e.g. physicians versus patients). Future studies should investigate these issues with larger samples.Wider implications of the findingsThese data, the first to examine how IVF providers and patients view and approach decisions regarding the reduction of fetuses, suggest several complications and dilemmas. This information has critical implications for future practice, guidelines, research and education of providers, patients, insurers, policymakers and others.Study funding/competing interestsFunding was provided by grant #UL1 RR024156 from the National Center for Research Resources, the Greenwall Foundation and the John Simon Guggenheim Memorial Foundation. There are no conflicts of interest to declare.

Project description:BackgroundIn recent years, tensions between IRBs and principal investigators (PIs) have risen, posing the needs to understand these conflicts, their underlying causes, and possible solutions. Researchers frequently complain about IRBs, but how IRBs perceive and respond to these criticisms is unclear.MethodsI conducted in-depth, semi-structured interviews of two hours each with 46 chairs, administrators, and members. I contacted the leadership of 60 IRBs around the country (every fourth one in the list of the top 240 institutions by NIH funding) and interviewed IRB leaders from 34 of these institutions (response rate = 55%).ResultsInterviewees suggest that IRBs and PIs may view the nature and causes of these conflicts very differently and misunderstand each other, exacerbating tensions. Interviewees often recognized that they were seen by PIs as having power, but many IRBs saw themselves as not having it (e.g., because they are "merely following the regulations," and their process is "open," impersonal and unbiased, and they are themselves subject to higher administrative agencies), or as having it, but feeling it is small, and/or justified (e.g., because it is based on overriding goals and "the community values," and IRBs are trying to help PIs). Questions emerge as to whether IRBs do or should have power, and if so, what kind, how much, and when. Several factors may affect these tensions.ConclusionsThis study, the first to explore how IRBs perceive and understand conflicts and power relationships with PIs, suggests how IRBs and PIs may differ in viewing their respective roles and relationships, exacerbating tensions. These issues have critical implications for IRBs and PIs--to enhance their awareness and understanding of these conflicts (e.g., that IRBs may have discretionary power) and the underlying causes involved, and for increasing attention to research, practice, and policy concerning these areas of IRB functioning and interactions with PIs.

Project description:BackgroundThe burgeoning field of biomedical research involving the mixture of human and animal materials has attracted significant ethical controversy. Due to the many dimensions of potential ethical conflict involved in this type of research, and the wide variety of research projects under discussion, it is difficult to obtain an overview of the ethical debate. This paper attempts to remedy this by providing a systematic review of ethical reasons in academic publications on human-animal chimera research.MethodsWe conducted a systematic review of the ethical literature concerning human-animal chimeras based on the research question: "What ethical reasons have been given for or against conducting human-animal chimera research, and how have these reasons been treated in the ongoing debate?" Our search extends until the end of the year 2017, including MEDLINE, Embase, PhilPapers and EthxWeb databases, restricted to peer-reviewed journal publications in English. Papers containing ethical reasons were analyzed, and the reasons were coded according to whether they were endorsed, mentioned or rejected.ResultsFour hundred thirty-one articles were retrieved by our search, and 88 were ultimately included and analyzed. Within these articles, we found 464 passages containing reasons for and against conducting human-animal chimera research. We classified these reasons into five categories and, within these, identified 12 broad and 31 narrow reason types. 15% of the retrieved passages contained reasons in favor of conducting chimera research (Category P), while 85% of the passages contained reasons against it. The reasons against conducting chimera research fell into four further categories: reasons concerning the creation of a chimera (Category A), its treatment (Category B), reasons referring to metaphysical or social issues resulting from its existence (Category C) and to potential downstream effects of chimera research (Category D). A significant proportion of identified passages (46%) fell under Category C.ConclusionsWe hope that our results, in revealing the conceptual and argumentative structure of the debate and highlighting some its most notable tendencies and prominent positions, will facilitate continued discussion and provide a basis for the development of relevant policy and legislation.

Project description:BackgroundMidwives are the main providers of routine antenatal care services including the routine ultrasound examination in Norway. The ultrasound examination can be perceived by expectant parents not only as a medical examination but also as a social event facilitating attachment to their fetus. This study explores Norwegian midwives' experiences and views on the role of ultrasound in clinical management of pregnancy.MethodsA qualitative study design was applied. Twenty-four midwives who all performed obstetric ultrasound examinations were recruited for focus group discussions and individual interviews. Data collection took place in 2015 in five hospitals in two different regions of Norway. Data were analyzed using qualitative content analysis.ResultsMidwives described obstetric ultrasound examinations as very valuable although doing ultrasounds placed high demands on their operational and counselling skills. Increasing requests for ultrasound from pregnant women were mentioned. Advancements in ultrasound diagnosis were considered to have put the fetus in the position of a patient, and that pregnant women declining ultrasound could be viewed as irresponsible by some health professionals. Ethical concerns were raised regarding the possibility of pregnancy termination when fetal anomalies were detected. Fears were also expressed that prenatal diagnoses including those following ultrasound, might create a society where only 'perfect' children are valued. However, participants stressed that their intention in performing ultrasound was to optimize pregnancy outcome and thereby assist expectant couples and their unborn children.ConclusionsMidwives in Norwegian maternity care services describe obstetric ultrasound as very valuable, playing a central role in pregnancy management by optimizing pregnancy outcomes. Although high demands are placed on operators' technical skills and counseling, midwives described performing obstetric ultrasound as very satisfying work. However, midwives believed that expectant parents' approach to the ultrasound examination, both its medical value and the precious images obtained of the fetus, could put extra strain on the midwives performing ultrasounds. The potential of ultrasound to detect fetal anomalies and the possibility that this may lead to termination of pregnancy, seemed to create some ambivalent feelings in midwives towards its use.

Project description:BACKGROUND:The clinical introduction of non-invasive prenatal testing for fetal aneuploidies is currently transforming the landscape of prenatal screening in many countries. Since it is noninvasive, safe and allows the early detection of abnormalities, NIPT expanded rapidly and the test is currently commercially available in most of the world. As NIPT is being introduced globally, its clinical implementation should consider various challenges, including the role of the surrounding social and cultural contexts. We conducted a qualitative study with healthcare professionals in Lebanon and Quebec as case studies, to highlight the relevance of cultural contexts and to explore the concerns that should be taken into account for an ethical implementation of NIPT. METHODS:We conducted semi-structured interviews with 20 healthcare professionals (HCPs), 10 from each country, practicing in the field of prenatal screening and follow up diagnostic testing, including obstetricians and gynecologists, nurses, medical geneticists and, genetic counselors. We aimed to 1) explore HCPs' perceptions and views regarding issues raised by NIPT and 2) to shed light on ways in which the introduction of the same technology (NIPT) in two different contexts (Lebanon and Quebec) raises common and different challenges that are influenced by the cultural norms and legal policies in place. RESULTS:We identified challenges to the ethical implementation of NIPT. Some are common to both contexts, including financial/economic, social, and organizational/ educational challenges. Others are specific to each context. For example, challenges for Lebanon include abortion policy and financial profit, and in Quebec challenges include lobbying by Disability rights associations and geographical access to NIPT. CONCLUSIONS:Our findings highlight the need to consider specific issues related to various cultural contexts when developing frameworks that can guide an ethically sound implementation of NIPT. Further, they show that healthcare professional education and training remain paramount in order to provide NIPT counseling in a way that supports pregnant women and couples' choice.

Project description:BackgroundWhereas many adolescents and young people with HIV require the transfer of care from paediatric/adolescent clinics to adult ART clinics, this transition is beset with a multitude of factors that have the potential to hinder or facilitate the process, thereby raising ethical challenges of the transition process. Decisions made regarding therapy, such as when and how to transition to adult HIV care, should consider ethical benefits and risks. Understanding and addressing ethical challenges in the healthcare transition could ensure a smooth and successful transition. The purpose of this study was to analyze the ethical challenges of transitioning HIV care for adolescents into adult HIV clinics.MethodsData presented were derived from 191 adolescents attending nine different health facilities in Uganda, who constituted 18 focus group discussions. In the discussions, facilitators and barriers regarding adolescents transitioning to adult HIV clinics were explored. Guided by the Silences Framework for data interpretation, thematic data analysis was used to analyze the data. The principles of bioethics and the four-boxes ethics framework for clinical care (patient autonomy, medical indications, the context of care, and quality of life) were used to analyze the ethical issues surrounding the transition from adolescent to adult HIV care.ResultsThe key emerging ethical issues were: reduced patient autonomy; increased risk of harm from stigma and loss of privacy and confidentiality; unfriendly adult clinics induce disengagement and disruption of the care continuum; patient preference to transition as a cohort, and contextual factors are critical to a successful transition.ConclusionThe priority outcomes of the healthcare transition for adolescents should address ethical challenges of the healthcare transition such as loss of autonomy, stigma, loss of privacy, and discontinuity of care to ensure retention in HIV care, facilitate long-term self-care, offer ongoing all-inclusive healthcare, promote adolescent health and wellbeing and foster trust in the healthcare system. Identifying and addressing the ethical issues related to what hinders or facilitates successful transitions with targeted interventions for the transition process may ensure adolescents and young people with HIV infection remain healthy across the healthcare transition.

Dataset Information

How much is a child worth? Providers' and patients' views and responses concerning ethical and policy challenges in paying for ART.

Publications

How much is a child worth? Providers' and patients' views and responses concerning ethical and policy challenges in paying for ART.

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