Predictive Genetic Testing,Uncertainty, and Informed Consent

2009 ◽  
pp. 474-495
Author(s):  
Eduardo A. Rueda
Keyword(s):  
Genetic Testing ◽  
Informed Consent ◽  
Informed Consent Process ◽  
Predictive Genetic Testing ◽  
Three Dimensions ◽  
Consent Process ◽  
The Public ◽  
The Individual

This chapter focuses on showing legitimate ways for coping with uncertainties within the informed consent process of predictive genetic testing. It begins by indicating how uncertainty should be theoretically understood. Then, it describes three dimensions of uncertainty with regard to both the role of genes in pathogenesis and the benefit to patients of undergoing predictive genetic testing. Subsequently, the ways by which institutions tame these uncertainties are explained. Since viewing genes as exceptional informational entities plays an important role in taming uncertainties, it explains why this conception should be abandoned. Then, it discusses how institutional taming of uncertainty becomes a source of paternalism. What is stressed is that in order to avoid paternalism and ensure transparency within the informed consent process, open-to-uncertainty mechanisms should be implemented before the public and the individual. How patients should deal with potential implications of testing for their relatives is also considered.

SWINE FLU FAILURE

PEDIATRICS ◽  
1978 ◽  
Vol 61 (5) ◽  
pp. 800-800
Author(s):  
L. K. Altman ◽  
Keyword(s):  
Informed Consent ◽  
Preventive Medicine ◽  
Health Program ◽  
Public Awareness ◽  
Swine Flu ◽  
Public Health Program ◽  
The Public ◽  
Moral Necessity ◽  
The Individual

Mass preventive medicine programs clearly depend on public awareness. In an era when informed consent is not only a moral necessity but a legal right, preventive medicine proponents now recognize they cannot proceed unless they recognize the role of publicity in educating the public—not only about the merits but the necessary dangers in a public health program. Any measure that is taken to prevent an illness, or potential complication of an existing illness, involves risk which must be weighed against the threat of what is being prevented. The experts say they are the only ones who can make the technical decisions and recommendations, but the emphasis on informed consent puts increased responsibility on the individual to accept or reject that advice. The swine flu immunization decision, like many other immunization policies, was made by a small group of selected "experts." Critics of the decision said they had little or no opportunity to voice opposition. Yet when decisions affecting the medical care of every person and every doctor's practice are made centrally, clearly the process needs modification to allow recognition of those with dissenting views or alternative plans. Otherwise, many suspect, there will be less support from those who are asked to take part in mass preventive medicine programs.

Predictive Genetic Testing: Congruence of Disability Insurers' Interests with the Public Interest

2007 ◽  
Vol 35 (S2) ◽  
pp. 52-58 ◽  
Author(s):  
Anita Silvers
Keyword(s):  
Genetic Testing ◽  
Public Interest ◽  
Genetic Information ◽  
Disability Insurance ◽  
Predictive Genetic Testing ◽  
The Other ◽  
Genetic Characteristics ◽  
The Public ◽  
Other Hand ◽  
The Individual

The idea that disability insurers would benefit if the use of predictive genetic testing expands may seem little short of obvious. If individuals with higher than species-typical genetic propensities for illness or disease are identified, and barred or discouraged from participating in disability insurance programs, is it not obvious that the amount that disability insurers pay out will decrease? Is there any reason to doubt that insurers thus would gain advantage by promoting genetic testing? Writers on this subject typically have taken on faith that advantage goes to whoever knows most about the genetic characteristics of the individual seeking insurance. They therefore have assumed, without proving, that insurers’ interests lie with proliferating genetic information about insurance seekers.Consequently, from a perspective that gives priority to commercial interests, denying insurers the freedom to obtain genetic information about insurance seekers or holders appears obviously damaging and even unfair. On the other hand, from a perspective that gives priority to the interests of citizens who may use insurance, the greater use of and access to predictive genetic testing sets off ethical alarms.

scholarly journals INFORMATION OF MEDICAL MALPRACTICE AND RISKS IN THE INFORMED CONSENT PROCESS BEFORE SURGERY IN INDONESIA

2021 ◽  
Vol 10 (2) ◽  
pp. 269
Author(s):  
Sutarno Sutarno ◽  
Maryati Maryati
Keyword(s):  
Informed Consent ◽  
Qualitative Methods ◽  
Medical Malpractice ◽  
Secondary Data ◽  
Relevant Information ◽  
Informed Consent Process ◽  
Consent Process ◽  
The Public ◽  
Medical Disputes ◽  
Statutory Regulation

<em>This study examines Indonesian statuary regulation that requires doctors or hospitals to explain the medical malpractices or risks to surgery patients during the informed consent process. The study was triggered by the frequent medical disputes caused by the patient's misinformation regarding possible medical malpractices or risks related to surgery. In this case, patients need transparent and relevant information during the informed consent process. Therefore, this study examines the statuary regulation that requires doctors or hospitals to explain the medical malpractices or risks to surgery patients during the informed consent process. It used secondary data collected from literature studies of relevant materials and analyzed using normative and qualitative methods. The results indicated that no statutory regulation requires doctors to explain the medical malpractices and risks associated with surgery during the informed consent. This means that the required transparency principle is often not implemented. Therefore, these laws are urgently needed because the public is misinformed about medical malpractices and risks</em>

scholarly journals Communicating Risks and Benefits in Informed Consent for Research: A Qualitative Study

2017 ◽  
Vol 4 ◽  
pp. 233339361773201 ◽  
Author(s):  
Lika Nusbaum ◽  
Brenda Douglas ◽  
Karla Damus ◽  
Michael Paasche-Orlow ◽  
Neenah Estrella-Luna
Keyword(s):  
Informed Consent ◽  
Informed Consent Process ◽  
Consent Process ◽  
Research Staff ◽  
Research Participants ◽  
Risks And Benefits ◽  
Successful Communication ◽  
Communication Practices ◽  
And Training

Multiple studies have documented major limitations in the informed consent process for the recruitment of clinical research participants. One challenging aspect of this process is successful communication of risks and benefits to potential research participants. This study explored the opinions and attitudes of informed consent experts about conveying risks and benefits to inform the development of a survey about the perspectives of research nurses who are responsible for obtaining informed consent for clinical trials. The major themes identified were strategies for risks and benefits communication, ensuring comprehension, and preparation for the role of the consent administrator. From the experts’ perspective, inadequate education and training of the research staff responsible for informed consent process contribute to deficiencies in the informed consent process and risks and benefits communication. Inconsistencies in experts’ opinions and critique of certain widely used communication practices require further consideration and additional research.

Epistemic and Ethical Duties in Clinical Decision-making

1999 ◽  
Vol 16 (1) ◽  
pp. 10-19 ◽  
Author(s):  
William O'Donohue ◽  
Deborah Henderson
Keyword(s):  
Informed Consent ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Informed Consent Process ◽  
Consent Process ◽  
Professional Status ◽  
The Public ◽  
Goal Selection ◽  
And Performance ◽  
Ethical Responsibilities

AbstractIn the course of psychotherapy, psychologists need to make important clinical decisions regarding treatment goal selection, measurement procedures, and treatment methods. These decisions can be made without regard to the epistemic and ethical responsibilities that accompany professional status. Epistemic duties are obligations to obtain and have knowledge, while ethical duties are obligations to apply this knowledge accurately. We argue that these epistemic and ethical responsibilities are invoked and can be adequately addressed in the informed consent process. When the informed consent process is violated or done poorly, our epistemic and ethical responsibilities are not met and the client may be harmed. We argue that what the public assumes it is buying from us (and what we purport to sell) are specialised knowledge and skills; when psychologists are not meeting their epistemic duties, what our clients are receiving instead is intuition and performance art. We discuss errors that occur in the course of psychotherapy, as well as how we as professionals must seek to reduce or eliminate them.

scholarly journals Training surgeons and the informed consent discussion in paediatric patients: a qualitative study examining trainee participation disclosure

2019 ◽  
Vol 8 (3) ◽  
pp. e000559 ◽  
Author(s):  
Kunal Bhanot ◽  
Justin Chang ◽  
Samuel Grant ◽  
Annie Fecteau ◽  
Mark Camp
Keyword(s):  
Informed Consent ◽  
Informed Consent Process ◽  
Consent Process ◽  
Training Process ◽  
Paediatric Hospital ◽  
Face To Face ◽  
Attitudes And Practices ◽  
Surgical Trainees ◽  
Trainee Surgeon

BackgroundThe process of obtaining informed consent is an important and complex pursuit, especially within a paediatric setting. Medical governing bodies have stated that the role of the trainee surgeon must be explained to patients and their families during the consent process. Despite this, attitudes and practices of surgeons and their trainees regarding disclosure of the trainee’s participation during the consent process has not been reported in the paediatric setting.MethodsNineteen face-to-face interviews were conducted with surgical trainees and staff surgeons at a tertiary-level paediatric hospital in Toronto, Canada. These were transcribed and subsequently thematically coded by three reviewers.ResultsFive main themes were identified from the interviews. (1) Surgeons do not consistently disclose the role of surgical trainees to parents. (2) Surgical trainees are purposefully vague in disclosing their role during the consent discussion without being misleading. (3) Surgeons and surgical trainees believe parents do not fully understand the specific role of surgical trainees. (4) Graduated responsibility is an important aspect of training surgeons. (5) Surgeons feel a responsibility towards both their patients and their trainees. Surgeons do not explicitly inform patients about trainees, believing there is a lack of understanding of the training process. Trainees believe families likely underestimate their role and keep information purposely vague to reduce anxiety.ConclusionThe majority of surgeons and surgical trainees do not voluntarily disclose the degree of trainee participation in surgery during the informed consent discussion with parents. An open and honest discussion should occur, allowing for parents to make an informed decision regarding their child’s care. Further patient education regarding trainees’ roles would help develop a more thorough and patient-centred informed consent process.

scholarly journals The Role of Nonverbal and Verbal Communication in a Multimedia Informed Consent Process

2011 ◽  
Vol 02 (02) ◽  
pp. 240-249 ◽  
Author(s):  
David Pieczkiewicz ◽  
Andrea Mahnke ◽  
Catherine McCarty ◽  
Justin Starren ◽  
Bonnie Westra ◽  
...  
Keyword(s):  
Informed Consent ◽  
Interaction Design ◽  
Informed Consent Process ◽  
Verbal Communication ◽  
Consent Process ◽  
Communication Styles ◽  
Question Asking ◽  
Original Process ◽  
Content Analyses

SummaryObjective: Nonverbal and verbal communication elements enhance and reinforce the consent form in the informed consent process and need to be transferred appropriately to multimedia formats using interaction design when re-designing the process.Methods: Observational, question asking behavior, and content analyses were used to analyze nonverbal and verbal elements of an informed consent process.Results: A variety of gestures, interruptions, and communication styles were observed. Conclusion: In converting a verbal conversation about a textual document to multimedia formats, all aspects of the original process including verbal and nonverbal variation should be one part of an interaction community-centered design approach.

scholarly journals The Role of Community Advisory Boards: Involving Communities in the Informed Consent Process

2001 ◽  
Vol 91 (12) ◽  
pp. 1938-1943 ◽  
Author(s):  
Ronald P. Strauss ◽  
Sohini Sengupta ◽  
Sandra Crouse Quinn ◽  
Jean Goeppinger ◽  
Cora Spaulding ◽  
...  
Keyword(s):  
Informed Consent ◽  
Informed Consent Process ◽  
Consent Process ◽  
Advisory Boards ◽  
Community Advisory Boards
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