Clinical Trial Details
— Status: Completed
Administrative data
| NCT number |
NCT02225171 |
| Other study ID # |
999914166 |
| Secondary ID |
14-HG-N166 |
| Status |
Completed |
| Phase |
|
| First received |
|
| Last updated |
|
| Start date |
August 23, 2014 |
| Est. completion date |
December 31, 2014 |
Study information
| Verified date |
December 2023 |
| Source |
National Institutes of Health Clinical Center (CC) |
| Contact |
n/a |
| Is FDA regulated |
No |
| Health authority |
|
| Study type |
Observational
|
Clinical Trial Summary
Preimplantation genetic diagnosis (PGD) is an assisted reproductive technology (ART) by which
embryos, created through in vitro fertilization (IVF), can be screened for genetic conditions
or traits before they are implanted into a woman s uterus. Within the past few years, a
controversial non-medical use of PGD has gained recognition as having possible significant
ethical implications. Non-medical sex selection (NMSS) describes the use of PGD technology to
choose the sex of a child for social, as opposed to medical, reasons. In the US and a select
few other countries, it is legal to use NMSS for family balancing, or the intentional
selection of an underrepresented sex to balance a family where the majority of the children
are of one sex. Proponents of family balancing believe that NMSS is an expression of
reproductive autonomy and is ethically acceptable on those grounds. Opponents are more likely
to cite beneficence (toward the existing children and the potential future child) and justice
(resource allocation and access, for example) as the basis for concerns around NMSS and
family balancing specifically. In the US and other countries, healthcare providers (HCPs) are
often the gatekeepers to this technology. There is little research exploring the experiences
of HCPs with PGD and NMSS. The Moral Experience framework (Hunt and Carnevale, 2011) is
useful for understanding the potential concerns of HCPs as well as their feelings and
behaviors evoked by lived and hypothetical experiences around NMSS. Also of interest is how
HCPs feel that decisions about NMSS are made and their preferences as to how they should be
made. Finally, there is concern that NMSS may be the first in a line of non-medical uses for
PGD and that a slippery slope toward what some describe as designer babies will follow. We
are interested in eliciting the traits that HCPs believe are hypothetically appropriate or
inappropriate for PGD and how they make the distinction. Interviews with HCPs (OBGYNs and
reproductive endocrinologists) on these topics will be transcribed and subjected to thematic
analysis in order to identify common themes. An understanding of the experiences and
attitudes of this stakeholder population can help clarify current issues at individual,
societal, and global levels and future directions for research and policy....
Description:
Preimplantation genetic diagnosis (PGD) is an assisted reproductive technology (ART) by which
embryos, created through in vitro fertilization (IVF), can be screened for genetic conditions
or traits before they are implanted into a woman s uterus. Within the past few years, a
controversial non-medical use of PGD has gained recognition as having possible significant
ethical implications. Non-medical sex selection (NMSS) describes the use of PGD technology to
choose the sex of a child for social, as opposed to medical, reasons. In the US and a select
few other countries, it is legal to use NMSS for family balancing, or the intentional
selection of an underrepresented sex to balance a family where the majority of the children
are of one sex. Proponents of family balancing believe that NMSS is an expression of
reproductive autonomy and is ethically acceptable on those grounds. Opponents are more likely
to cite beneficence (toward the existing children and the potential future child) and justice
(resource allocation and access, for example) as the basis for concerns around NMSS and
family balancing specifically. In the US and other countries, healthcare providers (HCPs) are
often the gatekeepers to this technology. There is little research exploring the experiences
of HCPs with PGD and NMSS. The Moral Experience framework (Hunt and Carnevale, 2011) is
useful for understanding the potential concerns of HCPs as well as their feelings and
behaviors evoked by lived and hypothetical experiences around NMSS. Also of interest is how
HCPs feel that decisions about NMSS are made and their preferences as to how they should be
made. Finally, there is concern that NMSS may be the first in a line of non-medical uses for
PGD and that a slippery slope toward what some describe as designer babies will follow. We
are interested in eliciting the traits that HCPs believe are hypothetically appropriate or
inappropriate for PGD and how they make the distinction. Interviews with HCPs (OBGYNs and
reproductive endocrinologists) on these topics will be transcribed and subjected to thematic
analysis in order to identify common themes. An understanding of the experiences and
attitudes of this stakeholder population can help clarify current issues at individual,
societal, and global levels and future directions for research and policy.
