The draft mentions thalasemia, but there is long list of inheritable diseases that can be checked out prior, to egg/sperm/embry donation or seeking a surrogate mother. I wonder why genetic counseling is not made mandatory for all concerned? When there are tests available why not use it prior to the big decisions/procedures?

Achondroplasia
Adenosine deaminase deficiency
Alpha-1-antitrypsin deficiency
Alzheimer’s disease (AAP gene)
Beta thalasemia
Cystic fibrosis
Epidermolysis bullosa
Fanconi anemia
Gaucher’s disease
Hemophilia A and B
Huntington’s disease
Muscular dystrophy (Duchenne and Becker)
Myotonic dystrophy
Neurofibromatosis type I
OTC deficiency
P53 cancers
Phenylketonuria
Retinitis pigmentosa
Sickle cell disease
Spinal muscular atrophy
Tay Sachs disease

Is it not mandatory because most of these tests can be done by preimplantation genetic diagnosis (PGD) of the embryo? That opens another can of undesirable issues that would need endless debating, but I believe it is extremely dangerous to push it through without debate, does not bode well for anybody; parents, child or surrogate, except maybe the clinics.

>>is an equally high probability of a child who is available for adoption being unhealthy-having an abnormality/ genetic disorder or other problems caused by having had a less than ideal environment in the womb or after birth. Anyway Adoption has no relevance to the issue at hand.

The argument was for, if the child is born with abnormality, then a healthy child….. of course what you say is true, health can take a downturn anytime.

I agree adoption is a personal decision.

I have only time to respond to one of the points you have raised, the others are important I will address them a little later, please pardon me the delay.

>> 25) The identity is not revealed quote/excepting information on the name and address – that is, the individual’s personal identity – of the gamete donor or the surrogate mother/

I wrote point 25 as it was not clear to me because of this: please see page 68 and 69 of the draft.

” The need to make the couple aware, if relevant, that a child born
through ART has a right to seek information about his genetic parent /
surrogate mother on reaching 18 years, excepting information on the
name and address – that is, the individual’s personal identity – of the
gamete donor or the surrogate mother. The couple is not obliged to
69
provide the information to which the child has a right, on their own to
the child when he / she reaches the age of 18, but no attempt must be
made by the couple to hide this information from the child should an
occasion arise when this issue becomes important for the child.”

If the child seek this information and is given it according to the above writing, the logical lead would be that the child may seek to find the surrogate mother, or am I missing a point here?

Like I wrote in the post, the draft is a complicated one and affects multiple people with each of its regulations, respective support groups will have to tease it out and help put in the stuff that is humane to all participants.

we on this blog are as concerned about the parents and childs -rights and safeguards as we are of the surrogate mothers. We are hoping that parallel support groups for the ones involved are active and we are able to exchange concerns and work in a healthy manner towards giving the required feedback to ICMR on the draft, that would take care of the physical, emotional, psychological health of the parents, surrogates and the child.

ARTpatient, if you are part of a support group for parents availing ART, may I request some links for their discussion forums (if open) it would be wonderful to follow those discussions so we are able to read more clearly into the issues. Thanks very much for stopping by and sharing.

16) In the event of child born with abnormality:

There is an equally high probability of a child who is available for adoption being unhealthy-having an abnormality/ genetic disorder or other problems caused by having had a less than ideal environment in the womb or after birth.
Anyway Adoption has no relevance to the issue at hand.

25)What about surrogate mothers rights, it is assumed that she will be ok with a child turning up at her house 18 years later?
The identity is not revealed.
quote/excepting information on the name and address – that is, the individual’s personal identity – of the gamete donor or the surrogate mother/

regards
mary

Thank you for that wonderful thought. I can see you have thought deep on these aspects.

It would have the power of transcending language barriers, that is scientific-medical terminology laden English to women who have no prior information about these situations. A video, say about Preeclampsia symptoms and its effects will convey a lot that is required and help her make a more informed decision. I am talking about entire packages of video materials that details all of the ART procedures. Which should be used in several stages as counseling material, to mentally prepare the surrogate undertaking this endeavor.

We want the surrogate mothers to be informed and be aware of the consequences of her decision right?

She wanting to build a much needed house, or save up for her childrens educations will be of little use is if she herself becomes ill due to medical complications arising from ART procedures. She would be able to evaluate more clearly when she understands what is at stake.

One of the reasons that India is a destination for reproductive tourism is the advantages that can be leveraged out of ignorance of surrogate mothers. The Clinics hiding behind incomprehensible terminology and keeping ignorance levels status quo will be mitigated if the draft regulations demands that clinics and agencies develop and use visual medium while counseling the surrogate mothers.

Every surrogate should be informed of her rights and responsibilities. It is the role of the hospital to provide her with appropriate counseling. I am sure there is so much that needs to be done in this field.

Since this is a direct interaction between society and science and technology, the usual run ins and hiding behind scientific terminology is bound to happen. All of modern science is done with an English audience in mind. Even legal documents and contracts are filled with terms that cannot be easily explained or translated in understandable terms. But that is no excuse, a industry that is spinning on so much money, can definitely make use of the digital era and make information available in the form of short movies on each and every procedure. Visual medium can be used extensively here to overcome the difficulty in translating medical situations to participants not familiar with English.