Non-disclosing preimplantation genetic diagnosis: Questions, challenges and needs for guidelines

Robert Klitzman
Fertility and Sterility
Originally published December 6, 2017

Consider This:

Non-disclosing Preimplantation Genetic Diagnosis (ND-PGD) is performed, but controversial, raising many questions.  It has been used when prospective parents at-risk for mutations highly associated with serious disease (especially Huntington’s disease [HD](1)), do not want to know their mutation-status, but wish to ensure that no mutation-containing embryos are transferred.  Physicians would then transfer only mutation-negative embryos, and not tell the patient whether any mutation-positive embryos were identified.  In 2002, Stern et al. described using ND-PGD successfully with 10 couples.1 

Pros and cons of non-disclosing PGD

Several advantages and disadvantages have been articulated.  Few individuals at-risk for HD want to learn their mutation-status.  Caused by an autosomal dominant mutation, the disease lacks treatment, and leads to debilitating neurological and psychiatric symptoms and death, generally in the 4th-5th decade of life.  Many at-risk individuals see a mutation-positive test result as a “death sentence,” and only 3%-21% of at-risk adults get tested (e.g. only 3-5% in Sweden).(2)

Though the patient may not be infertile, ND-PGD requires IVF, which has certain risks.  Yet many patients may see the procedure’s benefits as outweighing these dangers.  Misdiagnoses can also occur, but prenatal confirmatory tests can be performed.

The article is here.

Freezing Eggs and Creating Patients: Moral Risks of Commercialized Fertility

Elizabeth Reis and Samuel Reis-Dennis
The Hastings Center Report
First published: 24 November 2017

Abstract

There's no doubt that reproductive technologies can transform lives for the better. Infertile couples and single, lesbian, gay, intersex, and transgender people have the potential to form families in ways that would have been inconceivable years ago. Yet we are concerned about the widespread commercialization of certain egg-freezing programs, the messages they propagate about motherhood, the way they blur the line between care and experimentation, and the manipulative and exaggerated marketing that stretches the truth and inspires false hope in women of various ages. We argue that although reproductive technology, and egg freezing in particular, promise to improve women's care by offering more choices to achieve pregnancy and childbearing, they actually have the potential to be disempowering. First, commercial motives in the fertility industry distort women's medical deliberations, thereby restricting their autonomy; second, having the option to freeze their eggs can change the meaning of women's reproductive choices in a way that is limiting rather than liberating.

The information is here.