Will CRISPR Germline Engineering Close the Door to an Open Future?

The bioethical principle of autonomy is problematic regarding the future of the embryo who lacks the ability to self-advocate but will develop this defining human capacity in time. Recent experiments explore the use of clustered regularly interspaced short palindromic repeats (CRISPR)/Cas9 for germline engineering in the embryo, which alters future generations. The embryo's inability to express an autonomous decision is an obvious bioethical challenge of germline engineering.

Understanding the Experience of Stigma for Parents of Children with Autism Spectrum Disorder and the Role Stigma Plays in Families' Lives.

Stigma is widely perceived in the lives of families with autism spectrum disorder (ASD) yet large, systematic studies have not been undertaken. Following Link and Phelan's (Ann Rev Sociol 27:363-385, 2001) model, this study of 502 Simons Simplex Collection families details how different factors contribute to stigma and how each appears to increase the overall difficulty of raising a child with ASD. The model begins with the child's behavioral symptoms and then specifies stigma processes of stereotyping, rejection, and exclusion.

Is there concordance in attitudes and beliefs between parents and scientists about autism spectrum disorder?

There is no reported investigation comparing concordance in attitudes and beliefs about autism spectrum disorder between parents of children with autism spectrum disorder and scientists who research autism spectrum disorder. To investigate the level of concordance between these groups on causes of autism, priorities of research, perceived stigma, and disclosure of genetic test results, telephone interviews were conducted. Parents (n = 502) were recruited from the Simons Simplex Collection, and research scientists (n = 60) were recruited from investigators funded by the Simons Foundation.

Creating a three-parent child: an educational paradigm for the responsible conduct of research.

The field of assisted reproduction is renowned for its remarkable advances and constant pushing forward of research boundaries in an effort to offer innovative and effective methods for enhancing fertility. Accompanying these advances, however, are physiological, psychological, and bioethical consequences that must be considered. These concomitant advances and consequences make assisted reproduction an excellent educational paradigm for inculcating responsible conduct in both research and clinical practice.

Lessons learned from undergraduate students in designing a science-based course in bioethics.

Columbia University offers two innovative undergraduate science-based bioethics courses for student majoring in biosciences and pre-health studies. The goals of these courses are to introduce future scientists and healthcare professionals to the ethical questions they will confront in their professional lives, thus enabling them to strategically address these bioethical dilemmas. These courses incorporate innovative pedagogical methods, case studies, and class discussions to stimulate the students to think creatively about bioethical issues emerging from new biotechnologies.

The critical role of religion: caring for the dying patient from an Orthodox Jewish perspective.

Background And Objective: Culturally competent medical care for the dying patient by families and health care professionals is a challenging task especially when religious values, practices, and beliefs influence treatment decisions for patients at the end of life. This article describes end-of-life guidelines for hospital health care professionals caring for Orthodox Jewish patients and their families. Religious perspectives on advance directives, comfort care and pain control, nutrition and hydration, do not resuscitate/do not intubate (DNR/DNI), and extubation are often unfamiliar to the American medical community.

Bioethical considerations in translational research: primate stroke.

Controversy and activism have long been linked to the subject of primate research. Even in the midst of raging ethical debates surrounding fertility treatments, genetically modified foods and stem-cell research, there has been no reduction in the campaigns of activists worldwide. Playing their trade of intimidation aimed at ending biomedical experimentation in all animals, they have succeeded in creating an environment where research institutions, often painted as guilty until proven innocent, have avoided addressing the issue for fear of becoming targets.

Parental opinions about clinical research.

Objective: To characterize parental perception of clinical research, particularly in emergency settings. To identify specific aspects of clinical research that concern parents and to discuss how these concerns can be addressed.

Study Design: Quantitative and qualitative survey in tertiary care children's hospital and affiliated clinics.

Harmonizing regulations for biomedical research: a critical analysis of the US and Venezuelan systems.

This article aims to compare the national legal systems that regulate biomedical research in an industrialized country (United States) and a developing country (Venezuela). A new international order is emerging in which Europe, Japan and the United States (US) are revising common guidelines and harmonizing standards. In this article, we analyze - as an example - the US system.

A paradigm for inpatient resuscitation research with an exception from informed consent.

Objective: Resuscitation research with an exception from informed consent (EFIC) has not been reported in the inpatient or pediatric setting, and little practical information exists to guide application of EFIC regulations to inpatient or pediatric research. The objective of this study was to assess the feasibility of conducting inpatient pediatric resuscitation research with EFIC using handouts to communicate with parents of potential participants and to determine how many parents would likely allow their child to participate in such research.

Design: Verbal questionnaire.

Stem cells: science, policy, and ethics.

Human embryonic stem cells offer the promise of a new regenerative medicine in which damaged adult cells can be replaced with new cells. Research is needed to determine the most viable stem cell lines and reliable ways to promote the differentiation of pluripotent stem cells into specific cell types (neurons, muscle cells, etc). To create new cell lines, it is necessary to destroy preimplantation blastocysts.