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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

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
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Technology is rapidly evolving, and mental health professionals are increasingly using technology in their clinical work. In reaction to this shift, it is important that research examines the ethical implications of online behaviors. The current study examined the online practices of graduate students in the mental health field and generated

Technology is rapidly evolving, and mental health professionals are increasingly using technology in their clinical work. In reaction to this shift, it is important that research examines the ethical implications of online behaviors. The current study examined the online practices of graduate students in the mental health field and generated prediction models for online client searches and best practices in informed consent and online disclosure. The sample consisted of 316 graduate students in counseling, clinical, and school programs. Of those with clinical experience, a third had utilized the Internet to find information about their client. Progress in the participants' program, as measured by credits completed or in progress, and years of social networking experience were positively related to online client searches. The vast majority (over 80%) of individuals who conducted an online search did not obtain informed consent prior to the search. Curiosity was the most frequent reason given for conducting a client search. Previous professional discussions and belief that information online is private were not significant predictors of obtaining informed consent. The final analysis examined disclosure of client information and found that lower scores on ethical decision-making and years of social networking experience predicted online disclosure. This study is an important step in understanding the implications of the intersection of technology use, ethics, and clinical practice of graduate mental health professionals.
ContributorsHarris, Sara Elisabeth (Author) / Robinson Kurpius, Sharon E (Thesis advisor) / Tracey, Terence (Committee member) / Kinnier, Richard (Committee member) / Arizona State University (Publisher)
Created2012
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As of 2019, 30 US states have adopted abortion-specific informed consent laws that require state health departments to develop and disseminate written informational materials to patients seeking an abortion. Abortion is the only medical procedure for which states dictate the content of informed consent counseling. State abortion counseling materials have

As of 2019, 30 US states have adopted abortion-specific informed consent laws that require state health departments to develop and disseminate written informational materials to patients seeking an abortion. Abortion is the only medical procedure for which states dictate the content of informed consent counseling. State abortion counseling materials have been criticized for containing inaccurate and misleading information, but overall, informed consent laws for abortion do not often receive national attention. The objective of this project was to determine the importance of informed consent laws to achieving the larger goal of dismantling the right to abortion. I found that informed consent counseling materials in most states contain a full timeline of fetal development, along with information about the risks of abortion, the risks of childbirth, and alternatives to abortion. In addition, informed consent laws for abortion are based on model legislation called the “Women’s Right to Know Act” developed by Americans United for Life (AUL). AUL calls itself the legal architect of the pro-life movement and works to pass laws at the state level that incrementally restrict abortion access so that it gradually becomes more difficult to exercise the right to abortion established by Roe v. Wade. The “Women’s Right to Know Act” is part of a larger package of model legislation called the “Women’s Protection Project,” a cluster of laws that place restrictions on abortion providers, purportedly to protect women, but actually to decrease abortion access. “Women’s Right to Know” counseling laws do not directly deny access to abortion, but they do reinforce key ideas important to the anti-abortion movement, like the concept of fetal personhood, distrust in medical professionals, the belief that pregnant people cannot be fully autonomous individuals, and the belief that abortion is not an ordinary medical procedure and requires special government oversight. “Women’s Right to Know” laws use the language of informed consent and the purported goal of protecting women to legitimize those ideas, and in doing so, they significantly undermine the right to abortion. The threat to abortion rights posed by laws like the “Women’s Right to Know” laws indicates the need to reevaluate and strengthen our ethical defense of the right to abortion.
ContributorsVenkatraman, Richa (Author) / Maienschein, Jane (Thesis director) / Brian, Jennifer (Thesis director) / Abboud, Carolina (Committee member) / Historical, Philosophical & Religious Studies (Contributor) / School of Life Sciences (Contributor, Contributor) / Barrett, The Honors College (Contributor)
Created2020-05
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In 2013, Cynthia Daniels and a team of researchers at Rutgers University in New Brunswick, New Jersey, founded the Informed Consent Project. Daniels and the researchers assessed the medical accuracy of information within state-authored informational materials for abortion. States give those materials to women who want an abortion, but using

In 2013, Cynthia Daniels and a team of researchers at Rutgers University in New Brunswick, New Jersey, founded the Informed Consent Project. Daniels and the researchers assessed the medical accuracy of information within state-authored informational materials for abortion. States give those materials to women who want an abortion, but using their research, the Informed Consent Project found some information from those materials to be inaccurate, misleading, and coercive. The Informed Consent Project gathered a panel of researchers and medical specialists to review the information about embryological and fetal development from twenty-three states’ informational materials. They found that approximately one-third of that information was inaccurate. The work of the Informed Consent Project challenges abortion-specific informed consent laws, highlighting medical inaccuracies in state-authored informational materials as evidence that women’s consent to abortion may be based on false or misleading statements.

Created2021-06-01
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As of 2021, twenty-eight US states have informed consent laws for abortion, which is a medical procedure to terminate pregnancy, often called Women’s Right to Know laws. Those laws often require the state government to develop informational materials that healthcare providers must give to women before an abortion. Informational materials

As of 2021, twenty-eight US states have informed consent laws for abortion, which is a medical procedure to terminate pregnancy, often called Women’s Right to Know laws. Those laws often require the state government to develop informational materials that healthcare providers must give to women before an abortion. Informational materials generally include information about the process of fetal development, accompanied by illustrations or pictures, risks and effects of abortion, and alternatives to abortion. Supporters of informed consent laws for abortion argue that such information is important for women to make a decision to have an abortion. Individual states author and distribute those informational materials, which are a primary source of information for people who seek an abortion. Medical expert and abortion rights activists have criticized the materials for providing inaccurate information, making misleading statements, and using coercive language to discourage women from choosing abortion.

Created2021-06-10
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In Stuart v. Camnitz, the United States Court of Appeals for the Fourth Circuit affirmed the decision of a North Carolina District Court that declared a controversial ultrasound mandate for abortions unconstitutional in 2014. The ultrasound mandate was a part of the Woman’s Right to Know Act introduced in North

In Stuart v. Camnitz, the United States Court of Appeals for the Fourth Circuit affirmed the decision of a North Carolina District Court that declared a controversial ultrasound mandate for abortions unconstitutional in 2014. The ultrasound mandate was a part of the Woman’s Right to Know Act introduced in North Carolina in 2011, which placed several restrictions on abortion care providers in the state. If enforced, the ultrasound mandate would have required physicians to perform an ultrasound on every patient before an abortion and simultaneously describe the resulting image of the fetus regardless of whether the woman wanted to hear the description. The District Court ruled the mandate an unconstitutional violation of physicians’ free speech rights. The Fourth Circuit Court’s decision to affirm the District Court’s ruling established that the state could not compel healthcare providers to recite what the court called state ideology to patients against their medical judgment, which broke with precedent set by prior rulings by the Fifth and Eighth Circuit Courts in similar cases.

Created2021-05-24
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In 2019, Americans United for Life, hereafter AUL, published a model legislation, called the Women’s Right to Know Act, in their annual publication Defending Life. The goal of the model legislation, which AUL annually updates, is to help state governments enact enhanced informed consent laws for abortion. The Women’s Right

In 2019, Americans United for Life, hereafter AUL, published a model legislation, called the Women’s Right to Know Act, in their annual publication Defending Life. The goal of the model legislation, which AUL annually updates, is to help state governments enact enhanced informed consent laws for abortion. The Women’s Right to Know Act requires physicians to provide specific information to women before they may consent to having an abortion. It also suggests that individual US state governments to develop informational materials about abortion and pregnancy that healthcare providers must give to women before they receive an abortion. As of 2020, twenty-eight states have enacted informed consent laws for abortion that resemble the Women’s Right to Know Act. In a larger effort to dismantle legal access to abortion, the AUL’s Women’s Right to Know Act encourages individual states to restrict access to abortion to protect, what the organization calls, the unborn child.

Created2021-06-23
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The North Carolina state legislature passed The Woman’s Right to Know Act in 2011, which places several restrictions on abortion care in the state. The Woman’s Right to Know Act, or the Act, imposes informed consent requirements that physicians must fulfill before performing an abortion as well as a twenty-four

The North Carolina state legislature passed The Woman’s Right to Know Act in 2011, which places several restrictions on abortion care in the state. The Woman’s Right to Know Act, or the Act, imposes informed consent requirements that physicians must fulfill before performing an abortion as well as a twenty-four hour waiting period between counseling and the procedure for people seeking abortion, with exceptions for cases of medical emergency. Then-governor of North Carolina Beverly Perdue initially vetoed House Bill 854, which contained the Act, but the state legislature overrode her veto to pass the bill. In response to a lawsuit that the American Civil Liberties Union, or ACLU, and other organizations filed in 2011, a US district court judge blocked the law’s ultrasound mandate from going into effect and a later court case determined that the mandate was illegal. With the passage of the Act in North Carolina, the state passed several abortion regulations and mandated that abortion providers must inform women of specific details about their pregnancy before performing the abortion procedure.

Created2021-07-29
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In 2003, the Texas state legislature passed the Woman’s Right to Know Act, hereafter the Act, as Chapter 171 of the state’s Health and Safety Code. The Act sets requirements that physicians must follow during the informed consent process for abortion, or a medical procedure to terminate pregnancy, in Texas.

In 2003, the Texas state legislature passed the Woman’s Right to Know Act, hereafter the Act, as Chapter 171 of the state’s Health and Safety Code. The Act sets requirements that physicians must follow during the informed consent process for abortion, or a medical procedure to terminate pregnancy, in Texas. Lawmakers amended the Act and added several additional regulations that restrict access to abortion in 2011, 2013, 2015, and 2017. For instance, the Act requires that physicians perform abortions after sixteen weeks of pregnancy in ambulatory surgical centers or hospitals and states that physicians must perform an ultrasound to view images, called sonograms, of a developing fetus inside a woman’s uterus before a woman may receive an abortion. The Act further requires practitioners and clinics to offer state-developed informational materials to women who seek an abortion. The Act placed several restrictions on abortion care in Texas, making it more difficult for women to access safe and legal abortion care, which opponents have challenged in courts.

Created2021-07-15