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Biomedical subjects

Paul J Ford

Publications and source records attributed to Paul J Ford.

11 recordsLinked to original sources
PubMed2026

Preemptive hematopoietic stem cell transplantation in RUNX1 familial platelet disorder: a shared decision-making framework.

RUNX1 familial platelet disorder (RUNX1-FPD) is associated with a 35-50% lifetime risk of hematologic malignancy (HM). Like all germline HM predisposition syndromes, RUNX1-FPD can only be cured with allogeneic hematopoietic stem cell transplantation (HSCT). Current genetic screening techniques allow for early detection of germline predisposition and, consequently, the opportunity for HSCT before overt development of HM (i.e., preemptive HSCT). However, there is as yet no consensus on the use of preemptive HSCT for RUNX1-FPD. Described here is the case of an individual with RUNX1-FPD and a family history of HM who underwent preemptive HSCT. We introduce a shared decision-making framework designed to support individuals with RUNX1-FPD, their families, and their multidisciplinary clinical teams in evaluating whether and when to pursue preemptive HSCT versus continued surveillance. The framework reviews key medical factors that influence the decisions regarding timing of HSCT, including germline and somatic variants, clonal changes over time, familial history of HM, early morphologic or hematologic features, impacts on bleeding-related quality of life, and donor availability. The framework also summarizes the major risks and uncertainties potentially associated with preemptive HSCT while highlighting the associated ethical challenges. Together, the case and framework provide a structured, patient-centered approach for navigating the complex clinical decision of preemptive HSCT. Ongoing collaborative efforts to define cytogenetic and clonal changes preceding malignant transformation in RUNX1-FPD will refine the framework and bolster individualized treatment strategies aimed at preventing HM and improving the quality of life of individuals with RUNX1-FPD.

Humans↗
PubMed2006

Protecting human subjects in neurosurgical trials: the challenge of psychogenic dystonia.

The discomfort and suffering of medically refractory organic dystonia has lead to the pursuit of new potential treatment interventions, namely, pallidotomy and deep brain stimulation (DBS). The risks inherent in surgical procedures require a heightened awareness to the need for protecting the welfare of research subjects participating in surgical trials. To this end, excluding patients who are not appropriate candidates is a key part of the trial process. We argue that psychogenic dystonia, a condition that is both difficult to diagnose and difficult to treat, should be an exclusion criterion for DBS therapy, and neurosurgery in general. However, since there exists no definitive test for psychogenic dystonia, researchers must determine fair and just criteria for excluding patients whose dystonia is suspected to be primarily psychogenic.

Clinical Trials as Topic↗
PubMed2006

Balancing in ethical deliberation: superior to specification and casuistry.

Approaches to clinical ethics dilemmas that rely on basic principles or rules are difficult to apply because of vagueness and conflict among basic values. In response, casuistry rejects the use of basic values, and specification produces a large set of specified rules that are presumably easily applicable. Balancing is a method employed to weigh the relative importance of different and conflicting values in application. We argue against casuistry and specification, claiming that balancing is superior partly because it most clearly exhibits the reasoning behind moral decision-making. Hence, balancing may be most effective in teaching bioethics to medical professionals.

Bioethics↗
PubMed2006

Stimulating debate: ethics in a multidisciplinary functional neurosurgery committee.

Multidisciplinary healthcare committees meet regularly to discuss patients' candidacy for emerging functional neurosurgical procedures, such as Deep Brain Stimulation (DBS). Through debate and discussion around the surgical candidacy of particular patients, functional neurosurgery programs begin to mold practice and policy supported both by scientific evidence and clear value choices. These neurosurgical decisions have special considerations not found in non-neurologic committees. The professional time used to resolve these conflicts provides opportunities for the emergence of careful, ethical practices simultaneous with the expansion of therapy applications.

Aged↗
PubMed2005

Anti-infective therapy at the end of life: ethical decision-making in hospice-eligible patients.

Clear guidelines addressing the ethically appropriate use of anti-infectives in the setting of hospice care do not exist. There is lack of understanding about key treatment decisions related to infection treatment for patients who are eligible for hospice care. Ethical concerns about anti-infective use at the end of life include: (1) delaying transition to hospice, (2) prolonging a dying process, (3) prescribing regimens incongruent with a short life expectancy and goals of care, (4) increasing the reservoir of potential resistant pathogens, (5) placing unreasonable costs on a capitated hospice system. Although anti-infectives are thought to be relatively safe, they can place a burden on patients and be inconsistent to particular care plans. The current complex, and at times fragmented, medical care often fails to address these issues in decision-making. In many ways, the ethics governing the end of life decisions related to dialysis, hydration/nutrition, and hypercalcemia parallel those of anti-infectives. In this article we articulate important elements in ethical decision-making in the application of anti-infectives for patients who are eligible for hospice care, and we point to the need for prospective studies to help refine particular guidelines in these cases.

Adult↗