Nanette Elster

Growing Up With Autism: Challenges and Opportunities of Parenting Young Adult Children with Autism Spectrum Disorders

As the parent and stepparent of a child with autism, we witness a world that is quite different from parents with only neurotypical children. Tantrums don’t vanish after the age of three. Aggression is a way of life. Simple communication is a constant challenge. And dreams of a child’s future have to be altered and adapted. In the narratives that accompany this commentary, we see that the challenges of raising a child with autism do not necessarily diminish with age; they may, however, change because children with autism become adults with autism and this presents a new set of both challenges and opportunities. The current epidemic of young children with autism is giving rise to yet another epidemic—the rising number of young adults who are autistic. As one of the authors here mentioned, “the system is in for a tsunami of new individuals needing medical care of all types, needing continued supports for housing and vocational training, communication, occupational and physical therapy” (Cornell). According to a recent study published in Pediatrics, “[y]outh with an ASD have poor postsecondary employment and education outcomes, especially in the fi rst 2 years after high school” (Shattuck, 2012). With the rising number of children being diagnosed with autism, this employment disparity is likely to be exacerbated until or unless the workforce adapts to and accommodates the needs and skills of persons with autism. The needs of young adults with autism are only recently beginning to receive more attention from the media. But for these children’s parents, this issue has always been personal. The emotions on display in these narratives are heartfelt—even raw at times—and seem to swell like the wave of a tsunami itself as parents are now confronting what should be the independence of adulthood. With barriers to employment, health care and housing, young adults with autism remain largely dependent upon their parents. While the topic of transition to adulthood for those with autism is a vast one, implicating the need for wide scale policy change, certain themes emerge in these personal narratives that we wish to focus on here, which may well serve as a guide for that change.

Why Can't We Be Friends? A Case-Based Analysis of Ethical Issues with Social Media in Health Care.

Health care professionals’ use of social media can pose ethical challenges related to the boundary between professional and personal identities, privacy, confidentiality, and the trustworthiness of health care professionals.

Developing a Sperm Banking Consent Process

In this chapter, we focus exclusively on informed consent in sperm banking only with respect to sperm freezing for autologous use. We consider the necessary legal and ethical elements and individuals to be included in this process. We begin by considering the legal and ethical underpinnings of informed consent. We then explore the elements of consent that are necessary for adults preserving sperm followed by a discussion of the unique components of informed consent when a minor’s sperm is being cryopreserved. The chapter concludes with a list of recommended elements to consider in developing an informed consent process for sperm banking for autologous use.

The Hospice Patient’s Right to Oral Care: Making Time for the Mouth

The hospice philosophy embraces palliative care for the terminally ill, for whom quality of life is the central focus of comfort care management. Often, caregivers hesitate or simply do not elect to extend oral care for patients nearing the end of life, due to difficulties encountered in patient compliance, a sense of futility in doing so, staff time constraints in prioritizing care, underfunding, or a lack of education as to how and why such care should be delivered to the hospice patient. This article aims to show physiological and psychosocial reasons why the hospice patient has a need for properly and regularly implemented oral care and why dental professionals have an ethical responsibility to address the current void that exists in hospice-centered oral care. Varying viewpoints are discussed regarding the need for oral health monitoring and maintenance in both the capable patient with capacity and in the patient who lacks capacity and is totally dependent, yet who exhibits no particular signs of oral distress nor desire for hygiene measures. Consideration is given to family dynamics in such care. Oral care of the elderly patients and terminally ill is sorely lacking, and dental educators are challenged to cultivate in students a sense of professional duty toward caring for the vulnerable elderly patients. Dental professionals should create initiatives in developing, promoting, and implementing an appropriate standard of oral care for the hospice patient.

Under Attack: Reconceptualizing Informed Consent

In 2014, the American Bar Association (ABA) Special Committee on Bioethics and the Law (“Special Committee”) sponsored a presidential showcase at the ABA Annual Meeting entitled Forging New Frontiers: The Intersection of Bioethics and Biotechnology Law. The showcase explored the bioethical and legal issues that arise with the development of cutting edge technologies, addressing genomics, stem cell research, and nanotechnology. Despite its technological focus, however, one of the most provocative statements was made about one of the most established processes in medicine and ethics – informed consent. George Annas, our first author in this special issue of JLME, stated that “informed consent is under attack.” He argued that written consent should be dispensed with when doing clinical research. Because of the ever changing nature, purpose and process of informed consent, in its current form it no longer serves the goal of protecting patients and ensuring autonomous, informed decision-making.

Monopolizing Our Bodies? The Myriad Supreme Court Case and Issues of Access and Justice

The actress Angelina Jolie’s disclosure that she had a double mastectomy in 2013 shed a great deal of attention on the BRCA1 and BRCA2 genes. This disclosure was made concurrently with the June 13, 2013 U.S. Supreme Court decision in the case of Association for Molecular Pathology v. Myriad Genetics. The court held unanimously that naturally occurring DNA segment was a product of nature and thus not patent eligible but that complementary DNA (cDNA) was patent eligible. Now with the dismantling of Myriad’s patent monopoly on the genetic test, issues of access remain but the response of Myriad to develop a financial assistance program illustrates how influential the case may be in changing behavior. Improving accessibility to such tests while still incentivizing the creators of new technologies is a difficult balance to strike. It is one, however, that must be achieved.