Precision medicine and Friedreich ataxia: promoting equity, beneficence, and informed consent for novel gene therapies.

Friedreich Ataxia (FA) is an incurable neurodegenerative disease with systemic consequences affecting vital organs including those of the central and peripheral nervous systems. This article will use FA as an example to explore some of the practical and ethical issues emerging in precision medicine for rare diseases. It will first describe the existing management strategies available for FA patients, before considering the potential impact of gene therapy trials on the prevention and treatment of disease symptoms.

How the Doctrine of Double Effect Rhetoric Harms Patients Seeking Voluntary Assisted Dying.

Victoria's Voluntary Assisted Dying Act 2017 (Vic) became the first state law to permit VAD in Australia under limited circumstances from June 2019. Before this, many palliative care physicians relied on the doctrine of double effect (DDE) to justify the use of pain relievers for terminally ill patients that were known to hasten death. The DDE claims that there is a morally significant difference between intending evil and merely foreseeing some bad side-effect will occur as a result of one's actions.

Whose (germ) line is it anyway? Reproductive technologies and kinship.

Reproductive biotechnologies can separate concepts of parenthood into genetic, gestational and social dimensions, often leading to a fragmentation of heteronormative kinship models and posing a challenge to historical methods of establishing legal and/or moral parenthood. Using fictional cases, this article will demonstrate that the issues surrounding the intersection of current and emerging reproductive biotechnologies with definitions of parenthood are already leading to confusion regarding social and legal family ties for offspring, which is only expected to increase as new technologies develop. Rather than opposing these new technologies to reassert traditional concepts of the family, however, this article will explore the opportunities that these technologies represent for re-imagining various culturally cherished values of family-making in a way that is inclusive of diverse genders, sexualities and cultures.

Financial toxicity and dialysis: Autonomy and truth-telling in resource-limited settings.

From an ethical perspective, resource limitations provide a challenge for healthcare providers. Handling disclosure of the financial details of treatment options in a way that empowers patients, even in the face of extreme poverty, requires careful consideration of the personal preferences and motivations of each patient. This article will consider the high costs of dialysis for patients experiencing extreme poverty in light of various ethical principles, including informed consent and truth-telling.

Form, Function, Perception, and Reception: Visual Bioethics and the Artificial Womb.

Artificial wombs are already in development that have the potential to radically alter how we perceive the developing fetus and the role of pregnancy in society. That this technology would allow greater visibility of gestation than ever before also highlights the risk that artificial wombs will be used to further restrict women's reproductive liberty and access to abortion. This article uses Paul Lauritzen's theory of "visual bioethics" to explore the ethical significance of images of the developing fetus and how artificial wombs might best be visually designed and integrated into society.

Science fiction in bioethics: a role for feminist narratology.

This article explores the various reasons science-fictional references feature so prominently in bioethical debate, particularly regarding emerging reproductive biotechnologies. It will reflect on how science-fictional references are often co-opted in bioethics scholarship to promote technoconservatism, before considering how bioethicists can engage more appropriately with this genre in practice. This will include a discussion of which kinds of texts might be best suited to stimulate meaningful debate, and how using tools of literary analysis, such as narratology, can maximise the potential benefits of uniting these fields.

Conducting Clinical Trials in Twin Populations: A Review of Design, Analysis, Recruitment and Ethical Issues for Twin-Only Trials.

Although twins often participate in medical research, few clinical trials are conducted entirely in twin populations. The purpose of this review is to demonstrate the substantial benefits and address the key challenges of conducting clinical trials in twin populations, or 'twin-only trials'. We consider the unique design, analysis, recruitment and ethical issues that arise in such trials.

The Moral Superiority of Bioengineered Wombs and Ectogenesis for Absolute Uterine Factor Infertility.

This paper argues that uterine transplants are a potentially dangerous distraction from the development of alternative methods of providing reproductive options for women with absolute uterine factor infertility (AUFI). We consider two alternatives in particular: the bioengineering of wombs using stem cells (which would carry fewer risks than uterine transplants) and ectogenesis (which would not require surgical intervention for either the prospective mother with AUFI or a womb donor). Whether biologically or mechanically engineered, these womb replacements could provide a way for women to have children, including genetically related offspring for those who would value this possibility.

Pregnant people, inseminators and tissues of human origin: how ectogenesis challenges the concept of abortion.

The potential benefits of an alternative to physical gestation are numerous. These include providing reproductive options for prospective parents who are unable to establish or maintain a physiological pregnancy, and saving the lives of some infants born prematurely. Ectogenesis could also promote sexual equality in reproduction, and represents a necessary option for women experiencing an unwanted pregnancy who are morally opposed to abortion.

Unique benefits of ectogenesis outweigh potential harms.

This article will consider some of the ethical issues concerning ectogenesis technology, including possible misuse, social harms and safety risks. The article discusses three common objections to ectogenesis, namely that artificial gestation transgresses nature, risks promoting cloning and genetic engineering of offspring, and would lead to the commodification of children. Counterbalancing these concerns are an appeal to women's rights, reproductive autonomy, and the rights of the infertile to access appropriate assisted reproductive technologies.

Ethical issues in uterine transplantation.

Despite a recent surge of bioethical attention, ethical analysis of uterine transplantation is still in its early stages, and many of the key ethical issues remain underexamined and unresolved. In this paper, we briefly review some key ethical issues associated with uterine transplantation (beyond those associated with organ transplantation more generally). We structure our discussion in terms of Beauchamp and Childress' four principles of biomedical ethics: beneficence, non-maleficence, autonomy, and justice.

Developing the ethical framework of end-stage kidney disease care: from practice to policy.

Ethical issues relating to end-stage kidney disease (ESKD) care are increasingly being discussed by clinicians and ethicists but are still infrequently considered at a policy level or in the education and training of health care professionals. In most lower-income countries, access to kidney replacement therapies such as dialysis is not universal, leading to overt or implicit rationing of resources and potential exclusion from care of those who are unable to sustain out-of-pocket payments. These circumstances create significant inequities in access to ESKD care within and between countries and impose emotional and moral burdens on patients, families, and health care workers involved in decision-making and provision of care.

Public health crises in popular media: how viral outbreak films affect the public's health literacy.

Infectious disease epidemics are widely recognised as a serious global threat. The need to educate the public regarding health and safety during an epidemic is particularly apparent when considering that behavioural changes can have a profound impact on disease spread. While there is a large body of literature focused on the opportunities and pitfalls of engaging mass news media during an epidemic, given the pervasiveness of popular film in modern society there is a relative lack of research regarding the potential role of fictional media in educating the public about epidemics.

Utopian Literature and Bioethics: Exploring Reproductive Difference and Gender Equality.

This essay explores how feminist utopian literature can inform bioethical debates regarding the fundamental differences between female and male experiences of human reproduction, focusing on the use of biological and technological methods to redress natural inequalities arising from biological difference. Inherently speculative, utopian fiction serves as a useful tool for interrogating social and political attitudes toward procreation and childrearing, adopting a similar degree of abstraction as a philosophical thought experiment. Thus, there is the potential for bioethicists to engage more thoroughly with this form of literature in order to communicate key ethical issues related to reproductive rights and sexual equality.

Evaluating the use of twitter as a tool to increase engagement in medical education.

Background: Social media is regularly used by undergraduate students. Twitter has a constant feed to the most current research, news and opinions of experts as well as organisations. Limited evidence exists that examines how to use social media platforms, such as Twitter, effectively in medical education.

The Perfect Womb: Promoting Equality of (Fetal) Opportunity.

This paper aims to address how artificial gestation might affect equality of opportunity for the unborn and any resultant generation of "ectogenetic" babies. It will first explore the current legal obstacles preventing the development of ectogenesis, before looking at the benefits of allowing this technology to control fetal growth and development. This will open up a discussion of the treatment/enhancement divide regarding the use of reproductive technologies, a topic featured in various bioethical debates on the subject.

Should patients in a persistent vegetative state be allowed to die? Guidelines for a new standard of care in Australian hospitals.

In this article we will be arguing in favour of legislating to protect doctors who bring about the deaths of PVS patients, regardless of whether the death is through passive means (e.g. the discontinuation of artificial feeding and respiration) or active means (e.

Determination compliance abilities of some triticale varieties and comparison with wheat in Southeastern Anatolia conditions of Turkey.

In this research, were used 3 triticale varieties (Tacettinbey, Karma 2000 and Presto), one durum (Sariçanak 98) and one bread (Nurkent) wheat varieties. The study, was randomized as complete block design with four replications in 4 location (southeastern Anatolia of Turkey) and under rainfed conditions during the growing season 2010-2011. With an analysis of variance, significant differences were determined among locations, genotypes and genotype x location interactions at the 1% and 5% level.