30 research outputs found
Met het oog op de toekomst : voortplantingstechnologie, erfelijkheidsonderzoek en ethiek
Dit proefschrift betreft de ethiek van voortplantingstechnologie en erfelijkheidsonderzoek.
Een boek over dit thema kan uiteraard op verschillende manieren worden opgezet. Om
praktische redenen koos ik voor een opzet waarbij ik zoveel mogelijk gebruik kon maken
van lopende onderzoeksprojecten binnen het Instituut voor Gezondheidsethiek. Het boek
kreeg zodoende de structuur van 'capita selecta': een samenvoeging van afzonderlijk
geconcipieerde, zelfstandig leesbare, hoofdstukken.
Het verbindende thema - de 'rode draad' - is de verantwoordelijkheid van de arts, meer in
het bijzonder de voortplantingsarts en de hulpverlener die betrokken is bij erfelijkheidsvoorlichting
en - onderzoek: wat is in de verschillende contexten verantwoord handelen?
Hoe krijgt 'goed hulpverlenerschap' hier gestalte?' Dat deze vraag urgent is in de context
van de moderne voortplantingstechnologic, waar men voortdurend wordt geconfronteerd
met nieuwe technieken en toepassingen, behoeft geen betoog. Door welke morele overwegingen
zou de arts zich moeten laten leiden als de technologische imperatief geen
betrouwbare gids is? (In hoeverre) mag of moet de arts zich bijvoorbeeld iets gelegen
laten liggen aan de belangen van het eventuele toekomstige kind? De inhoud van 'goed
hulpverlenerschap' staat ook voortdurend tcr discussie op het dynamische terrein van
erfelijkheidsvoorlichting en -onderzoek: aan de orde is niet alleen de attitude van de
betreffende hulpverleners, maar ook hun verantwoordelijkheid in concrete conflictsituaties
Microarrays as a diagnostic tool in prenatal screening strategies: ethical reflection
Obstetric
Intrafamilial oocyte donation in classic galactosemia: ethical and societal aspects
Classic galactosemia is a rare inherited disorder of galactose metabolism. Primary ovarian insufficiency (POI) with subfertility affects > 80% of female patients and is an important concern for patients and their parents. Healthcare providers are often consulted for subfertility treatment possibilities. An option brought up by the families is intrafamilial oocyte donation (mother-to-daughter or sister-to-sister). In addition to POI, galactosemia patients can also present varying cognitive and neurological impairments, which may not be fully clear at the time when mother-to-daughter oocyte donation is considered. Ethical and societal aspects arise when exploring this option. This study aimed to provide guidance in aspects to consider based on the views of different groups involved in the oocyte donation process. A qualitative study using in-depth semi-structured interviews with > 50 participants (patients, family members, and healthcare providers) was conducted. From these interviews, themes of concern emerged, which are illustrated and reviewed: (1) family relations, (2) medical impact, (3) patients’ cognitive level, (4) agreements to be made in advance and organization of counseling, (5) disclosure to the child, and (6) need for follow-up. We conclude that discussing and carrying out intrafamilial oocyte donation in galactosemia patients requires carefully addressing these themes. This study adds value to the already existing recommendations on intrafamilial oocyte donation in general, since it highlights important additional aspects from the perspectives of patients and their families
Prenatal Screening: An Ethical Agenda for the Near Future
Prenatal screening for foetal abnormalities such as Down's syndrome differs from other forms of population screening in that the usual aim of achieving health gains through treatment or prevention does not seem to apply. This type of screening leads to no other options but the choice between continuing or terminating the pregnancy and can only be morally justified if its aim is to provide meaningful options for reproductive choice to pregnant women and their partners. However, this aim should not be understood as maximizing reproductive choice per se. Only if understood as allowing prospective parents to avoid suffering related to living with (a child with) serious disorders and handicaps can prenatal screening be a publicly or collectively funded programme. The alternative of moving prenatal testing outside the healthcare system into the private sector is problematic, as it makes these tests accessible only to those who can afford to pay for it. New developments in prenatal screening will have to be assessed in terms of whether and to what extent they either contribute to or undermine the stated aim of providing meaningful options for reproductive choice. In the light of this criterion, this article discusses the introduction of the new non-invasive prenatal test (NIPT), the tendency to widen the scope of follow-up testing, as well as the possible future scenarios of genome-wide screening and prenatal personalised medicine'. The article ends with recommendations for further debate, research and analysis