scholarly journals Hereditary diseases and child wish: exploring motives, considerations, and the (joint) decision-making process of genetically at-risk couples

2021 ◽  
Author(s):  
Y. Severijns ◽  
C. E. M. de Die-Smulders ◽  
T. Gültzow ◽  
H. de Vries ◽  
L. A. D. M. van Osch
Keyword(s):  
Decision Making ◽  
At Risk ◽  
Genetic Counseling ◽  
Genetic Disease ◽  
Hereditary Diseases ◽  
Decision Making Process ◽  
Joint Decision ◽  
Foster Parenting ◽  
Reproductive Decision ◽  
Child Wish

AbstractCouples who are at risk of transmitting a genetic disease to their offspring may face difficult challenges regarding reproductive decision-making. Deciding if, and how, to purse their child wish can be a demanding process. This study aims to describe the reproductive joint decision-making process of genetically at-risk couples. A qualitative study was conducted with 16 couples (N=31) at risk of transmitting a genetic disease to their offspring and who received genetic counseling. Most couples were not aware of all available reproductive options in the Netherlands. A variety of motives was reported with almost all couples expressing a preference towards a reproductive option in which the child is genetically related to both parents. Only a few couples considered other options such as the use of donor gametes, adoption, and foster parenting. All couples indicated that they had multiple conversations to reach a mutually supported reproductive decision. Several carriers reported feelings of guilt and in some couples, the woman appeared to have a greater impact in the decision-making process as she should carry a pregnancy and should undergo medical treatments. This study provides insight in the extensive decision-making process of genetically at-risk couples and the role of both partners in this process. These findings can guide the development of genetic counseling (e.g., increase awareness of available reproductive options) and decision support for these couples.

scholarly journals Charting Spiritual Care: Ethical Perspectives

2020 ◽  
pp. 199-211
Author(s):  
Guy Jobin
Keyword(s):  
Decision Making ◽  
Life History ◽  
Clinical Practice ◽  
Electronic Health Records ◽  
Ethical Issues ◽  
Care Team ◽  
Decision Making Process ◽  
Note Taking ◽  
Health Records ◽  
Joint Decision

Abstract The introduction of electronic health records (EHRs) into clinical practice appears to be irreversible. Where EHRs are used, chaplains have cooperated willingly with this way of reporting and sharing information with other members of the care team. They will have to, as a result, adapt their own note-taking practices to ensure effective, relevant and meaningful communication as part of the joint decision-making process. Although the specialized literature has addressed some of the “classic” ethical issues raised by EHRs, in particular those in connection with confidentiality and access, other questions, no less crucial, have received less attention and are addressed here. They include questions about the recognition of all players in the care relationship (both patients and caregivers) as subjects, and the communication of “non-generic” information about emotions, values, life history, etc. The fact that chaplains contribute to EHRs is both a sign of and a vector for recognition of their work within healthcare institutions – yet a recognition that could involve a price to pay for chaplains and patients.

Prenatal Genetic Diagnosis for Pediatricians

PEDIATRICS ◽  
1994 ◽  
Vol 93 (6) ◽  
pp. 1010-1015
Author(s):  
Keyword(s):  
Decision Making ◽  
Genetic Counseling ◽  
Prenatal Diagnosis ◽  
Diagnostic Tests ◽  
Genetic Disorder ◽  
Genetic Diagnosis ◽  
Decision Making Process ◽  
Know How ◽  
Prenatal Genetic Diagnosis ◽  
The Family

Pediatricians may be called upon to counsel a family in which prenatal diagnosis is being considered or in which there is a fetus with a genetic disorder. In some settings, the pediatrician may be the primary resource for counseling the family. More frequently, counseling may already have been provided by a clinical geneticist and/or obstetrician. However, because of a previous relationship with the family, the pediatrician may be called upon to review this information and to assist the family in the decision-making process. The pediatrician should be familiar with the principles of prenatal genetic diagnosis and know how to apply them to specific problems in genetic counseling, diagnosis, and management in clinical practice. At the same time, pediatricians should be familiar with resources available in their region for obtaining information about whether and how a specific disorder can be diagnosed and when and where to refer patients for prenatal genetic diagnosis. The technology of prenatal diagnosis is changing rapidly, and genetic consultants can assist pediatricians in the appropriate utilization and interpretation of the diagnostic tests that are available.

scholarly journals Parental Autonomy and the Obligation Not to Harm One's Child Genetically

1997 ◽  
Vol 25 (1) ◽  
pp. 5-15 ◽  
Author(s):  
Ronald M. Green
Keyword(s):  
Decision Making ◽  
Genetic Counseling ◽  
Genetic Disorders ◽  
Reproductive Decision ◽  
Societal Needs ◽  
Reproductive Decision Making ◽  
Parental Autonomy ◽  
Value Neutrality ◽  
Privacy And Confidentiality ◽  
Testing And Counseling

Until recently, genetics counselors and medical geneticists considered themselves lucky if they could provide parents with predictive information about a small number of severe genetic disorders. Testing and counseling were indicated primarily for conditions of thithis s sort. Out of respect for the autonomy of parental reproductive decision making, the prevailing ethic of genetic counseling stressed nondirectiveness and value neutrality As summarized by Arthur Caplan, the hallmarks of this stance includea willingness to provide testing and counseling to all who voluntarily seek it, the presentation of information concerning findings in a manner that is balanced and comprehensible to patients or clients, the fair and balanced presentation of all options for action if a problem is discovered, a willingness to answer all questions asked by those seeking services, and an obligation to protect privacy and confidentiality at all times regardless of societal needs or benefits.

Binary Logistic Regression Approach for Decision Making in Bridge Management

2021 ◽  
pp. 1-11
Author(s):  
Uditha A Wijesuriya ◽  
Adam G Tennant
Keyword(s):  
Decision Making ◽  
At Risk ◽  
Logistic Regression ◽  
Construction Material ◽  
Binary Logistic Regression ◽  
Decision Making Process ◽  
Bridge Management ◽  
Binary Logistic Regression Model ◽  
National Bridge Inventory ◽  
Load Types

Bridge management professionals need effective tools to help guide the decision-making process and maintain quality infrastructure in a region. A new binary response is herein defined by categorizing bridges as at-risk and not at-risk, based on the existing overall bridge condition scores. Fitting binary logistic regression model for the response, the probability of a bridge being at-risk is expressed in terms of the primary bridge factors age, load, types of construction material and structural design, and conditions of the deck, superstructure, and substructure. These estimated probabilities multiplied by specified consequence values are used to introduce the risk classes and their ranks. Employing the method for training and validating sets of sizes 13,540 and 3,385 in 2017, and 13,481 and 3,370 in 2018 data in National Bridge Inventory (NBI) Indiana, a statistically significant model is established containing age, load, conditions of both superstructure and substructure. Moreover, at-risk bridges are identified from Indiana NBI data in both years and for a subset from Connecticut in 2017. The novel bridge-ranking tool prioritizes bridges for maintenance purposes such as replacing or repairing and hence efficiently guides the management in the decision-making process for capital expenditures, and perhaps, for predicting the missing overall bridge condition.

scholarly journals Perceived Spousal Influence In The Service Decision-Making Process: A Cross Cultural Investigation

2011 ◽  
Vol 12 (4) ◽  
pp. 58 ◽  
Author(s):  
Marla Royne Stafford ◽  
Gopala Ganesh ◽  
Michael G. Luckett
Keyword(s):  
Decision Making ◽  
Cultural Study ◽  
Consumer Goods ◽  
Cross Cultural ◽  
Decision Making Process ◽  
Consumer Decision Making ◽  
Joint Decision ◽  
Academic Literature ◽  
Cross Cultural Study ◽  
Spousal Influence

<span>Although spousal influence in the decision-making process has been investigated in the academic literature, most of the existing research has focused on decision-making for consumer goods. This paper reports the results of a cross-cultural study of consumer decision making for two broad types of services, across three different household samples (US Americans, Indian Tamil US Immigrants, and Indian Tamils living in India). Findings of the study suggest that for both types of services, there is more joint decision making within American US households than in Indian-Tamil households. Joint decision making is least prevalent in Tamil households in India.</span>

scholarly journals Fostering Palliative Care Through Digital Intervention: A Platform for Adult Patients With Hematologic Malignancies

2021 ◽  
Vol 3 ◽  
Author(s):  
Lefteris Koumakis ◽  
Fatima Schera ◽  
Heather Parker ◽  
Panos Bonotis ◽  
Maria Chatzimina ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Healthcare Providers ◽  
Real Life ◽  
Hematologic Malignancies ◽  
Decision Making Process ◽  
Joint Decision ◽  
Horizon 2020 ◽  
Patient Reported ◽  
Potential Impact

Patient-reported outcomes (PROs) are an emerging paradigm in clinical research and healthcare, aiming to capture the patient's self-assessed health status in order to gauge efficacy of treatment from their perspective. As these patient-generated health data provide insights into the effects of healthcare processes in real-life settings beyond the clinical setting, they can also be viewed as a resolution beyond what can be gleaned directly by the clinician. To this end, patients are identified as a key stakeholder of the healthcare decision making process, instead of passively following their doctor's guidance. As this joint decision-making process requires constant and high-quality communication between the patient and his/her healthcare providers, novel methodologies and tools have been proposed to promote richer and preemptive communication to facilitate earlier recognition of potential complications. To this end, as PROs can be used to quantify the patient impact (especially important for chronic conditions such as cancer), they can play a prominent role in providing patient-centric care. In this paper, we introduce the MyPal platform that aims to support adults suffering from hematologic malignancies, focusing on the technical design and highlighting the respective challenges. MyPal is a Horizon 2020 European project aiming to support palliative care for cancer patients via the electronic PROs (ePROs) paradigm, building upon modern eHealth technologies. To this end, MyPal project evaluate the proposed eHealth intervention via clinical studies and assess its potential impact on the provided palliative care. More specifically, MyPal platform provides specialized applications supporting the regular answering of well-defined and standardized questionnaires, spontaneous symptoms reporting, educational material provision, notifications etc. The presented platform has been validated by end-users and is currently in the phase of pilot testing in a clinical study to evaluate its feasibility and its potential impact on the quality of life of palliative care patients with hematologic malignancies.

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