Values and value conflicts in implementation and use of preconception expanded carrier screening - an expert interview study.

BACKGROUND: Endeavors have been made to found and incorporate ethical values in most aspects of healthcare, including health technology assessment. Health technologies and their assessment are value-laden and could trigger problems with dissemination if they contradict societal norms. Per WHO definition, preconception expanded carrier screening is a new health technology that warrants assessment. It is a genetic test offered to couples who have no known risk of recessive genetic diseases and are interested pregnancy. A test may screen for carrier status of several autosomal recessive diseases and X-linked at one go. The technique has been piloted in the Netherlands and is discussed in other countries. The aim of the study was to examine values and value conflicts that healthcare experts recounted in relation to the discussion of implementation and use of preconception ECS in Sweden. METHODS: We interviewed ten experts, who were associated with influencing health policymaking in Sweden. We employed systematizing expert interviews, which endeavor to access experts' specialist knowledge. There were four female and six male informants, of which four were physicians, three bioethicists, one a legal expert, one a theologian and one a political party representative in the parliament. The participants functioned as members of two non-governmental bodies and three governmental organizations. We employed thematic analysis to identify themes, categories and subcategories. RESULTS: Two main themes surfaced: values and value conflicts. The main categories of Respect for persons, Solidarity, Human dignity, Do no harm, Health and Love formed the first theme, while values conflicting with autonomy and integrity respectively, constituted the second theme. Concepts relating to respect for persons were the most commonly mentioned among the participants, followed by notions alluding to solidarity. Furthermore, respondents discussed values conflicting with Swedish healthcare ones such as equality and solidarity. CONCLUSIONS: The experts highlighted values and concepts that are distinctive of welfare states such as Sweden and delineated how preconception ECS could challenge such values. Moreover, the analysis revealed that certain values were deemed more substantive than others, judging by the extent and detail of inference; for example, respect for persons and solidarity were on top of the list.

[Prospective parents with a mental impairment: is prior competency testing in this group of people who wish to have children justified?] / Wensouders met een verstandelijke beperking.

Doctors can decide to subject individuals who wish to become parents to a test to analyse their parental competence. From a legal perspective there is no justification to subject only those individuals with a mental impairment to such a test. In fact, it could be argued that all potential parents should undergo such a test, but due to the impact this would have on the healthcare system that is simply not feasible.

Ethical quandaries around expanded carrier screening in third-party reproduction.

Although current screening methods of gamete donors are capable of reducing the incidence of genetic anomalies in donor offspring below general population levels, targeted screening for a large number of conditions (expanded carrier screening or ECS) could be considered as part of the routine selection procedure for gamete donors. There are, however, important drawbacks to its practical implementation. Excluding all carriers of severe recessive monogenic pediatric disorders would disqualify virtually all donors, and other approaches negatively affect cost (and therefore access), present dilemmas in regard to disclosure of genetic findings, and/or overburden the intended parents. In all of the scenarios considered, adequate genetic counseling will be of central importance. Besides looking at benefits and drawbacks of possible ways of implementing ECS, we also examine whether a moral obligation exists to adopt ECS at all and on whose shoulders such an alleged obligation would rest: policymakers, medical staff at fertility clinics, sperm and egg banks, the intended parents? We argue that given the small risk reduction brought about by ECS, the possible negative effects of its implementation, and the absence of widespread preconception carrier screening in the general population, it is inconsistent to argue that there is a moral obligation to perform ECS in the context of donor conception. Finally, implications for the donors are discussed.

Committee Opinion No. 693 Summary: Counseling About Genetic Testing and Communication of Genetic Test Results.

Given the increasing availability and complexity of genetic testing, it is imperative that the practicing obstetrician-gynecologist or other health care provider has a firm comprehension of the benefits, limitations, and risks of offering a specific genetic test, as well as the importance of appropriate pretest and posttest counseling. The purpose of this Committee Opinion is to provide an outline of how obstetrician-gynecologists and other health care providers can best incorporate these tests into their current practices and provide appropriate pretest and posttest counseling to patients. Obstetrician-gynecologists and other health care providers should determine which tests will be offered as the standard in their practices so that similar testing strategies are made available to all patients. Practices should have procedures in place that ensure timely disclosure of test results to patients. As with any medical test, expectations regarding the performance of a genetic test should be discussed with the patient before the test is ordered. After counseling, patients should have the option to decline any or all testing. Pretest and posttest counseling should be done in a clear, objective, and nondirective fashion, which allows patients sufficient time to understand information and make informed decisions regarding testing and further evaluation or treatment. In addition to counseling each patient about her own personal risk, obstetrician-gynecologists and other health care providers should counsel patients regarding the risk for family members, including their potential to have affected offspring.

Committee Opinion No. 693: Counseling About Genetic Testing and Communication of Genetic Test Results.

Given the increasing availability and complexity of genetic testing, it is imperative that the practicing obstetrician-gynecologist or other health care provider has a firm comprehension of the benefits, limitations, and risks of offering a specific genetic test, as well as the importance of appropriate pretest and posttest counseling. The purpose of this Committee Opinion is to provide an outline of how obstetrician-gynecologists and other health care providers can best incorporate these tests into their current practices and provide appropriate pretest and posttest counseling to patients. Obstetrician-gynecologists and other health care providers should determine which tests will be offered as the standard in their practices so that similar testing strategies are made available to all patients. Practices should have procedures in place that ensure timely disclosure of test results to patients. As with any medical test, expectations regarding the performance of a genetic test should be discussed with the patient before the test is ordered. After counseling, patients should have the option to decline any or all testing. Pretest and posttest counseling should be done in a clear, objective, and nondirective fashion, which allows patients sufficient time to understand information and make informed decisions regarding testing and further evaluation or treatment. In addition to counseling each patient about her own personal risk, obstetrician-gynecologists and other health care providers should counsel patients regarding the risk for family members, including their potential to have affected offspring.

Bioethical considerations.

The clinical literature notes that pregnancy has become an expected benefit of solid organ transplant. Establishing "best practices" in the management of this particular transplant population requires careful consideration of the ethical dimensions, broadly speaking, of posttransplant pregnancies and these women's lived experiences. In this article, we present the current clinical and social science posttransplant pregnancy research. We specifically address the psychosocial and ethical issues surrounding preconception counseling and posttransplant health quality of life and mothering and suggest areas for future research.

Is there a moral obligation to conceive children under the best possible conditions? A preliminary framework for identifying the preconception responsibilities of potential parents.

BACKGROUND: The preventative paradigm of preconception care is receiving increasing attention, yet its boundaries remain vague in three respects: temporally; agentially; and instrumentally. Crucially, it remains unclear just who is to be considered a 'potential parent', how soon they should take up preconception responsibilities, and how weighty their responsibilities should be. DISCUSSION: In this paper, we argue that a normal potential parent of reasonable prudence has a moral duty to adequately optimize the conditions under which she or his reproductive partner will conceive, though a proportionality calculus calls for toleration of several forms of preconception behaviour that are non-ideal from the perspective of reproductive risk. We distinguish between five categories of potential parents to which different duties of preconception care should be ascribed. This framework is advanced to assign preconception care responsibilities with more precision than is often done in the current debate on preconception care. We conclude by applying our theoretical framework to three types of preconception care interventions: consumption of folic acid; keeping one's weight under control; and engaging in preconception genetic screening. Our analysis shows that the literature on preconception care often glosses over crucial distinctions between different types of potential parents and uses a notion of preconception beneficence that may be overly demanding. Nevertheless, preconception moral duties will often be weighty and reluctance to accept such duties on account of the burden they impose do not warrant preconception insouciance. SUMMARY: To avoid misplaced responsibility ascriptions in the growing field of preconception care, distinctions must be made between different types of potential parents to whom different degrees of preconception responsibility apply. We present such a preliminary framework and bring it to bear on the cases of folic acid consumption, obesity and genetic testing.

How the contractualist account of preconception negligence undermines prenatal reproductive autonomy.

Suppose a physician advises a woman to delay her planned pregnancy for a few months in order to significantly reduce the likelihood that her baby will suffer with Spina Bifida. If the woman chooses to ignore this advice and conceives soon after, I believe most people would consider it a matter of common sense that the child thus born is a victim of this woman's negligence, even if it is fortunate enough to not be burdened with Spina Bifida. This common sense judgement appeared to have been done in by the fact that the timing of conception can be identity-influencing, and so the child that is born only exists because of its mother's decision to ignore her physician's advice. However, recently, contemporary contractualist theories have been used to make sense of preconception negligence towards persons whose existence is a result of that same negligence. I will briefly discuss this interesting development and then show how this retrieval of the common sense judgement comes at a great cost to prenatal reproductive autonomy.

Ethical aspects of paternal preconception lifestyle modification.

This Clinical Opinion points to a potential conflict between the scarcity of evidence on paternal preconception risk factors for adverse pregnancy outcomes and the view that preconception care should be also directed at men. We argue that from an ethical perspective, responsible fatherhood starts already before conception, as long as the evidence increases on the benefits of paternal preconception lifestyle (modification). Our explorative study suggests that the strength of the evidence for paternal preconception lifestyle modification is important for men. We argue that 5 aspects together determine the moral responsibility of prospective fathers to modify their behavior: the strength of the evidence of the risk factor, the modifiability of the risk, the efforts necessary to eliminate or diminish the risk factor, the severity of harm, and the probability that harm will occur and that it will be prevented by modifying the risk factor. The case of paternal preconception smoking illustrates the analysis.

Preconception care: a parenting protocol: a moral inquiry into the responsibilities of future parents towards their future children.

In the Netherlands fertility doctors increasingly formulate protocols, which oblige patients to quit their unhealthy lifestyle before they are admitted to IVF procedures. We argue that moral arguments could justify parenting protocols that concern all future parents. In the first part we argue that want-to-be parents have moral responsibilities towards their future children to prevent them from harm by diminishing or eliminating risk factors before as well as during the pregnancy. This is because of the future children's potential to become of a certain type, more specifically: a person that will be the want-to-be parents' child. Want-to-be parents intend to become pregnant and therefore have an additional moral reason to diminish the risks. Also, people who become pregnant unintentionally have the responsibility to prevent their children from harm, unless they become pregnant due to contraception failure. All people not wanting to become pregnant should use contraception methods carefully. In the second part of this paper we translate the want-to-be parents' responsibilities into practice. We distinguish four determinants of risk factors: modifiability, chance, severity and effort. We examine some evidence-based risk factors based on these variables and deduce levels of responsibility. In conclusion, formulating informal requirements for want-to-be parents is morally required and therefore also for want-to-be parents in need of medical assistance. The protocols developed by fertility doctors in the Netherlands could be seen as the precursor for a general, informal Parenting Protocol that could be developed on the basis of an extended and thoroughly debated risk-responsibility analysis.

The moral obligation to create children with the best chance of the best life.

According to what we call the Principle of Procreative Beneficence (PB),couples who decide to have a child have a significant moral reason to select the child who, given his or her genetic endowment, can be expected to enjoy the most well-being. In the first part of this paper, we introduce PB,explain its content, grounds, and implications, and defend it against various objections. In the second part, we argue that PB is superior to competing principles of procreative selection such as that of procreative autonomy.In the third part of the paper, we consider the relation between PB and disability. We develop a revisionary account of disability, in which disability is a species of instrumental badness that is context- and person-relative.Although PB instructs us to aim to reduce disability in future children whenever possible, it does not privilege the normal. What matters is not whether future children meet certain biological or statistical norms, but what level of well-being they can be expected to have.

Reproductive autonomy, the non-identity problem, and the non-person problem.

The Non-Identity Problem is the problem of explaining the apparent wrongness of a decision that does not harm people, especially since some of the people affected by the decision would not exist at all were it not for the decision. One approach to this problem, in the context of reproductive decisions, is to focus on wronging, rather than harming, one's offspring. But a Non-Person Problem emerges for any view that claims (1) that only persons can be wronged and (2) that the person-making properties allow for there to be human non-persons. Consider an individual human organism that is prevented from ever possessing the person-making properties. On person-only accounts of the victims of wronging, this organism cannot be wronged by anyone. Hence even individuals whose decisions prevent it from ever possessing the person-making properties cannot wrong it. But this is counter-intuitive. We can think of examples where a human organism is wronged by precisely those decisions that prevent it from possessing the person-making properties. The best solution to this problem, in the case where the person-making property is rational self-governance in pursuit of a meaningful life, is to adjust the concept of a person so that it refers, not merely to those with the immediate capacity for rational self-governance in pursuit of a meaningful life, but also to those with a higher-order capacity for such self-governance. Any solution to the Non-Identity Problem that focuses on wronging rather than harming should incorporate this sort of solution to the Non-Person Problem.

Genetic technologies and the regulation of reproductive decision-making in Australia.

This article provides a critical analysis of the current Australian regulatory landscape at the interface between genetics and reproductive decision-making. The authors argue that a comparative analysis with other countries and international law and a contextual examination of the way law regulates concepts such as disease and health, abnormality and normality is necessary before we can develop appropriate policy and legislative responses in this area. Specific genetic testing technologies are considered including prenatal genetic testing, preimplantation genetic diagnosis and inheritable genetic modification. An increasing number of members of the Australian community are using genetic testing technologies when they decide to have a baby. The authors argue that as concepts of disease and health vary among members of the community and the potential to test for traits other than illness increases, a new tension arises between an ethic of individual choice and a role for government in regulating reproductive decision-making.