Stephen Donnelly (Wicklow, Fianna Fail) | Oireachtas source

I move amendment No. 89:

In page 46, to delete lines 18 to 34, and in page 47, to delete lines 1 to 11 and substitute the following: “ “AHR treatment to which this Part applies” means—

(a) PGT,

(b) HLA matching, and

(c) sex selection;

“genetic counselling”, in relation to AHR treatment to which this Part applies, means a service provided by a genetic counsellor, with clinical governance provided by a relevant specialist in any case where the genetic counsellor is not also a relevant specialist, under which he or she counsels a person regarding—

(a) the potential risks and implications arising from and after the provision of such treatment, and

(b) other options (if any) available in lieu of such treatment;

“genetic counsellor”, in relation to AHR treatment to which this Part applies, means a person who has the requisite skills and judgment to provide genetic counselling as regards such treatment by virtue of—

(a) holding a qualification prescribed (following, on and after the establishment day, consultation by the Minister with the AHRRA) for the purposes of this definition,

(b) having the practical experience prescribed (following, on and after the establishment day, consultation by the Minister with the AHRRA) for the purposes of this definition, or

(c) holding a qualification, and having the practical experience, prescribed (following, on and after the establishment day, consultation by the Minister with the AHRRA) for the purposes of this definition;

“genetic disease” means a disease caused by single gene or chromosomal abnormalities that can be inherited and that, on the basis of existing scientific and medical evidence, confers a high risk on the person with the disease of having—

(a) a serious physical or mental disability,

(b) a serious illness, or

(c) a fatal condition;

“HLA matching” means an AHR treatment using PGT to test and select an embryo for implantation in the womb of a woman for the purpose of matching the tissue of a child who is born as a result of the treatment with the tissue of a child who suffers from a life-limiting condition;

“PGT” means pre-implantation genetic testing;

“PGT-A” means PGT which falls within paragraph (a) of the definition of “pre-implantation genetic testing”;

“PGT-M” means PGT which falls within paragraph (b) of the definition of “pre-implantation genetic testing”;

“PGT-SR” means PGT which falls within paragraph (c) of the definition of “pre-implantation genetic testing”;

“pre-implantation genetic testing” means a test performed to analyse the DNA (deoxyribonucleic acid) of embryos for the purpose of determining genetic abnormalities, or for the undertaking of HLA matching, and includes—

(a) such testing for aneuploidies (being embryos with an abnormal chromosomal complement),

(b) such testing for single gene defects,

(c) such testing for chromosomal structural rearrangements, and

(d) such other testing prescribed (following, on and after the establishment day, consultation by the Minister with the AHRRA) for the purposes of this definition;”.

I propose, through amendments Nos. 89, 91 and 92, to delete much of section 43 and replace it with new terminology and definitions. Much of the terminology has been updated since the Bill was drafted, which goes to the rapidly evolving nature of what we are legislating for. In broad terms, what was termed in the published Bill as pre-implantation genetic diagnosis, PGD, is now described as either PGT-M, for mono-genetic defects, or PGT-SR, for chromosomal structural management, while pre-implantation genetic screening, PGS, has become PGT-A, for aneuploidy, in the amendments. We are also looking to add definitions for genetic counselling and genetic counsellor.

Amendments Nos. 93 and 94 will delete sections 45 and 46 and replace them with sections reflecting the new terms "PGT-M", "PGT-SR" and "PGT-A". Although the terminology may have changed, the specific criteria set out in the new section 45 to be met in order for PGT-M or PGT-SR to be provided remains essentially the same as in the Bill as initiated. PGT-A, on the other hand, can be a rather controversial practice, and the new section 46 will need to be re-examined by my officials, in conjunction with experts in the field, to ensure the criteria for its provision are sufficiently tight.

Amendment No. 96 will introduce a new section in respect of genetic counselling. Those wishing to avail of PGT-M or PGT-SR will be required to undertake pre-testing genetic counselling. For PGT-A, it will be only in the relatively small proportion of cases where a complex chromosomal variant is discovered in the testing process that genetic counselling will be mandatory before any further AHR treatment provided.

There is currently no registration or accreditation framework in Ireland in respect of genetic counsellors. In practice, however, those currently providing genetic counselling services within the State are registered at UK or EU level. The UK level is the Genetic Counsellor Registration Board and the EU level is the European Board of Medical Genetics.

Amendments Nos. 95 and 109 relate, respectively, to a minor editing change and a change consequential to changing the term "PGD" to "PGT" later in the Bill.