Tags

Type your tag names separated by a space and hit enter

Preimplantation genetic diagnosis: does age of onset matter (anymore)?
Med Health Care Philos 2009; 12(2):187-202MH

Abstract

The identification and avoidance of disease susceptibility in embryos is the most common goal of preimplantation genetic diagnosis (PGD). Most jurisdictions that accept but regulate the availability of PGD restrict it to what are characterized as 'serious' conditions. Line-drawing around seriousness is not determined solely by the identification of a genetic mutation. Other factors seen to be relevant include: impact on health or severity of symptoms; degree of penetrance (probability of genotype being expressed as a genetic disorder); potential for therapy; rate of progression; heritability; and age of onset. In the original applications of PGD, most, if not all of these factors were seen as necessary but none was seen as sufficient for determining whether a genetic condition was labelled 'serious'. This, however, is changing as impact on health or severity of symptoms is coming to eclipse the other considerations. This paper investigates how age of onset (primarily in the context of the United Kingdom (UK)) has become considerably less significant as a criterion for determining ethically acceptable applications of PGD. Having moved off the threshold of permitting PGD testing for only fatal (or seriously debilitating), early-onset diseases, I will investigate reasons for why age of onset will not do any work to discriminate between which adult-onset diseases should be considered serious or not. First I will explain the rationale underpinning age of onset as a factor to be weighed in making determinations of seriousness. Next I will challenge the view that later-onset conditions are less serious for being later than earlier-onset conditions. The final section of the paper will discuss some of the broader disability concerns at stake in limiting access to PGD based upon determinations of the 'seriousness' of genetic conditions. Instead of advocating a return to limiting PGD to only early-onset conditions, I conclude that the whole enterprise of trying to draw lines of what is to count as a 'serious' condition is itself problematic and in certain ways morally misleading.

Authors+Show Affiliations

Novel Tech Ethics, Bioethics Department, Dalhousie University, Intellectual Commons, 1234 LeMarchant St., Halifax, Nova Scotia, Canada. tim.krahn@dal.ca

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

18979183

Citation

Krahn, Timothy. "Preimplantation Genetic Diagnosis: Does Age of Onset Matter (anymore)?" Medicine, Health Care, and Philosophy, vol. 12, no. 2, 2009, pp. 187-202.
Krahn T. Preimplantation genetic diagnosis: does age of onset matter (anymore)? Med Health Care Philos. 2009;12(2):187-202.
Krahn, T. (2009). Preimplantation genetic diagnosis: does age of onset matter (anymore)? Medicine, Health Care, and Philosophy, 12(2), pp. 187-202. doi:10.1007/s11019-008-9171-x.
Krahn T. Preimplantation Genetic Diagnosis: Does Age of Onset Matter (anymore). Med Health Care Philos. 2009;12(2):187-202. PubMed PMID: 18979183.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Preimplantation genetic diagnosis: does age of onset matter (anymore)? A1 - Krahn,Timothy, Y1 - 2008/11/01/ PY - 2007/12/21/received PY - 2008/10/03/accepted PY - 2008/11/4/pubmed PY - 2009/7/16/medline PY - 2008/11/4/entrez SP - 187 EP - 202 JF - Medicine, health care, and philosophy JO - Med Health Care Philos VL - 12 IS - 2 N2 - The identification and avoidance of disease susceptibility in embryos is the most common goal of preimplantation genetic diagnosis (PGD). Most jurisdictions that accept but regulate the availability of PGD restrict it to what are characterized as 'serious' conditions. Line-drawing around seriousness is not determined solely by the identification of a genetic mutation. Other factors seen to be relevant include: impact on health or severity of symptoms; degree of penetrance (probability of genotype being expressed as a genetic disorder); potential for therapy; rate of progression; heritability; and age of onset. In the original applications of PGD, most, if not all of these factors were seen as necessary but none was seen as sufficient for determining whether a genetic condition was labelled 'serious'. This, however, is changing as impact on health or severity of symptoms is coming to eclipse the other considerations. This paper investigates how age of onset (primarily in the context of the United Kingdom (UK)) has become considerably less significant as a criterion for determining ethically acceptable applications of PGD. Having moved off the threshold of permitting PGD testing for only fatal (or seriously debilitating), early-onset diseases, I will investigate reasons for why age of onset will not do any work to discriminate between which adult-onset diseases should be considered serious or not. First I will explain the rationale underpinning age of onset as a factor to be weighed in making determinations of seriousness. Next I will challenge the view that later-onset conditions are less serious for being later than earlier-onset conditions. The final section of the paper will discuss some of the broader disability concerns at stake in limiting access to PGD based upon determinations of the 'seriousness' of genetic conditions. Instead of advocating a return to limiting PGD to only early-onset conditions, I conclude that the whole enterprise of trying to draw lines of what is to count as a 'serious' condition is itself problematic and in certain ways morally misleading. SN - 1572-8633 UR - https://www.unboundmedicine.com/medline/citation/18979183/Preimplantation_genetic_diagnosis:_does_age_of_onset_matter__anymore_ L2 - https://doi.org/10.1007/s11019-008-9171-x DB - PRIME DP - Unbound Medicine ER -