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- All Subjects: Medical Ethics
- Creators: Marchant, Gary
- Creators: Piemonte, Nicole
Description
ABSTRACT Whole genome sequencing (WGS) and whole exome sequencing (WES) are two comprehensive genomic tests which use next-generation sequencing technology to sequence most of the 3.2 billion base pairs in a human genome (WGS) or many of the estimated 22,000 protein-coding genes in the genome (WES). The promises offered from WGS/WES are: to identify suspected yet unidentified genetic diseases, to characterize the genomic mutations in a tumor to identify targeted therapeutic agents and, to predict future diseases with the hope of promoting disease prevention strategies and/or offering early treatment. Promises notwithstanding, sequencing a human genome presents several interrelated challenges: how to adequately analyze, interpret, store, reanalyze and apply an unprecedented amount of genomic data (with uncertain clinical utility) to patient care? In addition, genomic data has the potential to become integral for improving the medical care of an individual and their family, years after a genome is sequenced. Current informed consent protocols do not adequately address the unique challenges and complexities inherent to the process of WGS/WES. This dissertation constructs a novel informed consent process for individuals considering WGS/WES, capable of fulfilling both legal and ethical requirements of medical consent while addressing the intricacies of WGS/WES, ultimately resulting in a more effective consenting experience. To better understand components of an effective consenting experience, the first part of this dissertation traces the historical origin of the informed consent process to identify the motivations, rationales and institutional commitments that sustain our current consenting protocols for genetic testing. After understanding the underlying commitments that shape our current informed consent protocols, I discuss the effectiveness of the informed consent process from an ethical and legal standpoint. I illustrate how WGS/WES introduces new complexities to the informed consent process and assess whether informed consent protocols proposed for WGS/WES address these complexities. The last section of this dissertation describes a novel informed consent process for WGS/WES, constructed from the original ethical intent of informed consent, analysis of existing informed consent protocols, and my own observations as a genetic counselor for what constitutes an effective consenting experience.
ContributorsHunt, Katherine (Author) / Hurlbut, J. Benjamin (Thesis advisor) / Robert, Jason S. (Thesis advisor) / Maienschein, Jane (Committee member) / Northfelt, Donald W. (Committee member) / Marchant, Gary (Committee member) / Ellison, Karin (Committee member) / Arizona State University (Publisher)
Created2013
Description
Advocacy groups work across many aspects of “death with dignity” practice and treatment, and provide insight across multiple aspects of “death with dignity”. This study argues that key advocacy groups in the American death with dignity movement influenced the broader conceptualization of death with dignity in a way that makes patients more able to achieve it. This influence has been a dynamic process across different periods of practice starting the discussion of “death with dignity” in 1985 through today, although this thesis extends only to 2011. The question in this study is how do the three main historical advocacy groups in the US: the Hemlock Society, Compassion in Dying, and Compassion and Choices, conceptualize death with dignity with regards to patient and doctor relationship, legal and policy factors, and medical technologies and protocols? This study found that the Hemlock Society (1980-2005) characterized death with dignity as a terminally ill patient being able to “self-deliver” from suffering via autoeuthanasia regardless of medical community approval or legality. Compassion in Dying (1993-2007) characterized death with dignity as involved advocacy work with terminal patients and their communities to pursue palliative care and hospice up to the point of assisted death. This organization was also involved in the passing of Oregon Death with Dignity Act. Compassion and Choices (2007-present) characterized death with dignity similarly to Compassion in Dying but also advocated for adequate management of pain and suffering symptoms in palliative care to prevent people from desiring death over the illness. Conceptualizing death with dignity is important for understanding why patients want death with dignity and better accommodating their end of life needs when they are suffering with terminal illness.
ContributorsCohan, Hailey Elizabeth (Author) / Ellison, Karin (Thesis advisor) / O'Neil, Erica (Committee member) / Piemonte, Nicole (Committee member) / Arizona State University (Publisher)
Created2019
Description
Noninvasive prenatal testing using cell-free fetal DNA (CffDNA) testing is a rapidly developing area in prenatal diagnosis. Fetal genetic testing can occur with a simple maternal blood sample, since CffDNA can be found in maternal plasma. Thus, no harm is caused to mother or fetus to obtain this genetic information, providing significant benefits for those users. How the test should be integrated in existing prenatal programs has yet to be seen. CffDNA testing is an exciting technology and has attracted attention from many stakeholders, yet the lack of regulation and guidance has left legal, ethical, and social questions unanswered. This paper outlines a number of those issues expressed in the present literature on the matter.
ContributorsVeeder, Shaylynn Lee (Author) / Marchant, Gary (Thesis director) / Robert, Jason (Committee member) / Milleson, Valerye (Committee member) / Barrett, The Honors College (Contributor) / School of Social Transformation (Contributor) / School of Politics and Global Studies (Contributor) / Sandra Day O'Connor College of Law (Contributor) / Department of Psychology (Contributor)
Created2014-05
Description
Death with Dignity is a concept that initially began as a set of philosophical and ethical principles that sought to define what it meant to die a "good" death that was reasonable to the person experiencing the dying process. This dying process is terminal illness, or any condition that cannot be cured and who's ultimate prognosis is death. Today, Death with Dignity still embodies this, but it is also a set of legal and medical treatments and practices that can be used to aid terminal patients in accomplishing a "good" death. The Death with Dignity treatment options that are chiefly discussed in this study are patient withdrawal of care, patient control of pain medications, and physician-assisted suicide. Physician-assisted suicide is legal in six states in the US excluding Arizona. Considering that Oregon is the first state to pass a Death with Dignity Act and that it is the precedent for all other Acts, this study sought to understand the differences in perception of physician-assisted suicide between Arizona and Oregon in the pursuit of clarifying what barriers are still in place in Arizona to passing a Death with Dignity act. To ask the question of "Do physicians and ethics committee members in Arizona support Death with Dignity in the forms of patient control of pain medications, withdrawal of treatment, and physician-assisted suicide?", a literature review was conducted to determine important national and local perceptions of physician-assisted suicide and Death with Dignity, a 14-question, structured survey was created with the identified concerns, and it was distributed to Arizona health care workers by email and in person. This survey was approved by ASU's Institutional Review Board. This survey found that 100% of participants would vote for a Death with Dignity Act in Arizona if it were on a ballot measure. 76% of participants would aid a terminally-ill and eligible patient in physician-assisted suicide under some circumstances if it were legal in Arizona, and 24% of participants would never aid a patient in physician-assisted suicide. The concerns with physician-assisted suicide that were marked most important by Arizona healthcare workers were that hospice is a better option for the terminally ill and that physician-assisted suicide may be misused with disadvantaged persons. The most important factors of terminal illness that influence views of physician-assisted suicide marked by Arizona healthcare workers were the amount of pain the patient is expected to experience in the end of life, the amount of pain that can be relieved for the patient, the expected quality of life of the patient, and the patient's right to autonomy in healthcare. The significant differences between Oregon and Arizona in this study were the importance of expected mental decline of patient, patient's wishes that differ from family's, and hospice being a better option than suicide in influencing views of physician-assisted suicide. These differences could be deemed hurdles to Death with Dignity legislation in Arizona. This study recommended addressing those differences in public education and medical education and seeking Death with Dignity legislation via ballot measure.
ContributorsCohan, Hailey Elizabeth (Author) / Brian, Jennifer (Thesis director) / Piemonte, Nicole (Committee member) / Stevenson, Christine (Committee member) / School of Life Sciences (Contributor, Contributor) / W. P. Carey School of Business (Contributor) / Barrett, The Honors College (Contributor)
Created2017-05