Surrogate mothers (ART Bill 2008) Part 1
I read a post on Surrogacy-politics at Kafila by authors Imrana and Mary who aim to bring the Assisted Reproductive Technology (ART) regulation Bill 2008 to open forum readers, for debate and discussion. Please read the post and comments to know where this is going. In response to their article, Raghu Karnad, who was on the team drafting an earlier version, allayed some doubts and raised many more in me. The bill itself is here. Sections of the regulations that did not appear self explanatory and satisfactory to my (lay person’s) curiosity and concerns have been copied here. These sections have the page number of draft bill, for easy reference. The short title for each of these regulations are mine, to help readers get a quick idea about it. My doubts on confusing issues in these regulations are at the bottom of each regulation, numbered 2 to 25 (bold).
These notes/doubts/questions here, in addition to the ones already voiced at Kafila, along with Mary and Raghu’s responses, have helped me focus a little more on some of the stuff in the bill. The topics have endless issues and run in many different directions, even while just gathering the basics to pose a question.
Though every aspect that the bill touches on, needs intense scrutiny, this post is limited to the sections related to the surrogate mother. It includes issues that affect voluntary, commercial as well as altruistic surrogate mothers. The second category (commercial surrogate mothers) are the ones who provide this service in exchange for money.
If readers can respond and alleviate my doubts as ungrounded with plausible reason/s, we can then delete it. If additional questions come to readers’ minds, which definitely will happen, given the diverse issues involved and depending on their own areas of knowledge, please do post them as comments and we’ll them to move to the relevant sections. .
It would be deeply appreciated for the post not to be viewed exclusively as a “woman’s issue”. When the biology of the woman is effected, either long term or in the immediate scenario, it invariably effects the man, the child, the family and society. Hence it is not just a woman’s issue, it is everyone’s issue.
Also, readers primed to think of this as an issue mainly effecting economically weaker section, third world cheap option business and such; which parts of it definitely are, such as highlighted in this post in NYT blog, please do keep eyes open for the possibility of surrogacy becoming an option for all women, in an unforeseen financial crunch, as in this case reported here, about an educated woman taking up this option when hit by the recession (the NDTV article title is misleading)..
Again, it is fine with me if the woman wants to be a surrogate to ease her economic burden as long as she is completely informed in her decision and the consequences of it. .
Better yet, one hopes that in the draft bill, in addition to legal issues, the experts would have taken care of the Indian woman involved with such a procedure, and that it provides the necessary safeguards regarding her health; physical, psychological and emotional..
Here are the sections from ART regulation bill:
1) Relevant Definitions (p4 -5):
t) “surrogacy”, means an arrangement in which a woman agrees to a pregnancy, achieved through assisted reproductive technology, in which neither of the gametes belong to her or her husband, with the intention to carry it to term and hand over the child to the person or persons for whom she is acting as a surrogate; (p4)
u) “surrogate mother”, means a woman who agrees to have an embryo generated from the sperm of a man who is not her husband and the oocyte of another woman, implanted in her to carry the pregnancy to full term and deliver the child to its biological parent(s); (p5)
v) “surrogacy agreement”, means a contract between the person(s) availing of assisted reproductive technology and the surrogate mother;
w) “unmarried couple”, means a man and a woman, both of marriageable age, living together with mutual consent but without getting married (p5)
2) (Duties of ART clinic) – medical tests and surrogate (p15 +):
Assisted reproductive technology clinics shall ensure that patients, donors of gametes and surrogate mothers are eligible to avail of assisted reproductive technology procedures under the criteria prescribed by the rules under this Act and that they have been medically tested for such diseases, sexually transmitted or otherwise, as may be prescribed and all other communicable diseases which may endanger the health of the parents, or any one of them, surrogate or child. (p15)
What about tests for Genetic disorders?
3) Information confidentiality:
Assisted reproductive technology clinics shall ensure that information about clients, donors and surrogate mothers is kept confidential and that information about assisted reproductive technology treatment shall not be disclosed to anyone other than a central database to be maintained by the Indian Council of Medical Research, except with the consent of the person or persons to whom the information relates, or in a medical emergency at the request of the person or persons or the closest available relative of such person or persons to whom the information relates, or by an order of a court of competent jurisdiction. (p16)
Does this mean ICMR is the sole agency that can access and use this information? I understand the need for patient confidentiality, but isn’t this the data that should be used for sociological and medical research?
4) Determining patients requesting surrogacy:
No assisted reproductive technology clinic shall consider conception by surrogacy for patients for whom it would normally be possible to carry a baby to term. Provided that where it is determined that unsafe or undesirable medical implications of such conception may arise, the use of surrogacy may be permitted. (p16)
a) How are new technologies accounted for? Some solution may be available in some other part of the world (wrt to foreign seekers of surrogacy) such as ovarian transfers from twin sisters, which in future has the scope of being available for non twin relatives too.
b) How does one deflect off these requests, where a solution maybe available elsewhere?
c) Clear reasons where surrogates are necessary would be useful;
For example, Florida law requires that a woman have a medical indication for a gestational carrier to be utilized. The most common indications include a woman who has congenital absence of the uterus, prior surgery to remove her uterus, severe scarring of the uterine cavity, or a medical history that precludes pregnancy. In addition to meeting the medical requirement, a separate legal contract is required before treatment can begin.
5) Material and information storage use and misuse:
All assisted reproductive technology clinics shall maintain detailed records, in such manner as may be prescribed, of all donor oocytes, sperm or embryos used, the manner and technique of their use, the individual or couple or surrogate mother, in respect of whom it was used, and the deoxyribonucleic acid (DNA) fingerprint of the individual or couple and the child born as a result of assisted reproductive technology treatment or procedures.(p17)
Records maintained under sub-section (1) of this section shall be maintained for at least a period of ten years, upon the expiry of which (p18) the assisted reproductive technology clinic shall transfer the records to a central database of the Indian Council of Medical Research.
a) Strongly disagree here, the data should be simultaneously stored at the clinic and ICMR, information about day to day procedures/ materials should be backed up at ICMR
b) Very strongly object to data of biological material (eggs/sperms/embryos) that can be misused by clinics left unmonitored.
c) Why should the clinic sit on it for 10 years and then hand it to ICMR? This provides scope for data and material misuse.
6) Semen banks advertise for and compensate donors (egg/sperm/surrogate):
Semen banks shall obtain semen from males between twenty one years of age and forty five years of age, both inclusive, and arrange to obtain oocytes from females between twenty one years of age and thirty five years of age, both inclusive, and examine the donors for such diseases, sexually transmitted or otherwise, as may be prescribed, and all other communicable diseases which may endanger the health of the parents, or any one of them, surrogate or child. (p20) A semen bank may advertise for gamete donors and surrogates, who may be compensated financially by the bank. (p20)
This seems to be different from the surrogacy agreement, see definitions. Need clarifications here.
7) Number of times a donation can be done/used:
A semen bank shall not supply the sperm of a single donor for use more than seventy five times (8) No woman shall donate oocytes more than six times in her life, with not less than a three-months interval between the oocyte pick-ups. (p20)
Why is pregnancy not accounted here?
The definite number of pregnancies that a surrogate is limited to should be referred here, has it been worked out?
8) Rights of child conceived through surrogacy in relation to surrogate:
The parents of a minor child have the right to access information about the donor, other than the name, identity or address of the donor, or the surrogate mother, when and to the extent necessary for the welfare of the child. (p25)
a) Access to information, please clearly state what kind of information, medical or otherwise.
b) If it is information that is already stored in the database, it violates section 9 see above; where it states that consent is necessary for all parties, the one right above sounds like it is mandatory that information is available to the parents.
10) Surrogacy agreement is legally enforceable:
Both the couple or individual seeking surrogacy through the use of assisted reproductive technology, and the surrogate mother, shall enter into a surrogacy agreement which shall be legally enforceable. (p26)
a) Here case scenarios would be useful, what are possible situations that would lead to legal tussles between these parties?
b) Who fights on behalf of the surrogate? Whom will it be charged to?
c) Some of these cases appear very complicated, see here:
http://www.asrm.org/Media/LegallySpeaking/legally_index.html
11) Health insurance of surrogate mother:
All expenses, including those related to insurance, of the surrogate related to a pregnancy achieved in furtherance of assisted reproductive technology shall, during the period of pregnancy and after delivery as per medical advice, and till the child is ready to be delivered as per medical advice, to the biological parent or parents, shall be borne by the couple or individual seeking surrogacy. (p26)
a) There are always chances of long term effects after pregnancies, that might effect future pregnancies and her immune system in general, this must be taken into consideration. There has to be provision for long term insurance that surrogate mothers can fall back on in future?
b) What happens if the surrogate mother dies during childbirth? Will there be compensation and who gets compensated?
c) Post childbirth complications will be covered by the insurances, one assumes, does it definitely include treatment for postpartum depression? And other infections that commonly arise due to childbirth?
-A comprehensive list of medical situations that arise due/during/after childbirth, has to be listed in the draft. And the surrogate provided for insurances for those.
12) Compensation from surrogacy seeking couple/individual:
Notwithstanding anything contained in sub-section (2) of this section and subject to the surrogacy agreement, the surrogate mother may also receive monetary compensation from the couple or individual, as the case may be, for agreeing to act as such surrogate. (p26)
I do not understand this. Somebody please clarify whether it is the semen banks and the ones availing the services together/individually compensate the surrogate mother.
13) A surrogate mother shall relinquish all parental rights over the child. (p26) .
Imrana and Mary suggested that in the event that she cannot part with the baby………
I agree.
13) Number of surrogate pregnancies allowed in the Draft Act:
No woman under twenty one years of age and over forty five years of age shall be eligible to act as a surrogate mother under this Act. Provided that no woman shall act as a surrogate for more than three successful live births in her life. (p26)
The word successful live births is worrisome, unsuccessful pregnancies, miscarriages etc need to be accounted here. Specifically, does it exclude a still-born baby delivered after a full term pregnancy (or in the third trimester)? Every pregnancy, whatever way it ends, has health implications, wear and tear on the body and mind.
14) Rules concerning seeking of surrogacy:
Individuals or couples may obtain the service of a surrogate through a semen bank, or advertise to seek surrogacy provided that no such advertisement shall contain any details relating to the caste, ethnic identity or descent of any of the parties involved in such surrogacy. No assisted reproductive technology clinic shall advertise to seek surrogacy for its clients.
Interesting, seems like proliferation of handlers for the industry. This seems like an eyewash, tailored for clients seeking surrogate mothers who are from outside India, the clinics offering services for surrogate pregnancies are certain to offer tacit services to help seek surrogate mothers.
15) Number of embryo transfers allowed according to Draft Act:
If the first embryo transfer has failed in a surrogate mother, she may, if she wishes, decide to accept on mutually agreed financial terms, at most two more successful embryo transfers for the same couple that had engaged her services in the first instance. No surrogate mother shall undergo embryo transfer more than three times for the same couple. (p27)
Ambiguous! I would like to know if there is ceiling to total number of embryo transfers during a woman’s lifetime is considered, given each transfer can be risky, with dangers to health of the surrogate?
16) In the event of child born with abnormality:
The person or persons who have availed of the services of a surrogate mother shall be legally bound to accept the custody of the child / children irrespective of any abnormality that the child / children may have, and the refusal to do so shall constitute an offence under this Act. (p27)
The case for adoption of healthy children is right here.
17) Access to information about the people involved:
Subject to the provisions of this Act, all information about the surrogate shall be kept confidential and information about the surrogacy shall not be disclosed to anyone other than the central database of the Indian Council of Medical Research, except by an order of a court of competent jurisdiction. (p27)
a) Will it be used by ICMR for research? What if independent researchers want to avail the data for purely research reasons, will some provisions be made? A consent form maybe?
b) The surrogate mothers health, the children born out of these procedures have to be tracked, such as the study below;
18) Surrogate mothers cannot be an oocyte donor:
A surrogate mother shall not act as an oocyte donor for the couple or individual, as the case may be, seeking surrogacy. (p27)
Would like to understand the reasoning behind this?
19) Spouse consent for surrogate:
In the event that the woman intending to be a surrogate is married, the consent of her spouse shall be required before she may act as such surrogate. (p27)
a) There have been cases after giving the consent, the spouse has had second thoughts and filed for a divorce (in the US) what then?
b) I had already asked this as a question to Mary; What if the woman is unmarried does she not require consent from anybody? Mary also seeks the elusive answer.
20) Who can be surrogate:
A relative, a known person, as well as a person unknown to the couple may act as a surrogate mother for the couple. In the case of a relative acting as a surrogate, the relative should belong to the same generation as the women desiring the surrogate. (p27)
21) Foreigners interaction with surrogate through local guardian:
A foreigner or foreign couple not resident in India, or a non-resident Indian individual or couple, seeking surrogacy in India shall appoint a local guardian who will be legally responsible for taking care of the surrogate during and after the pregnancy as per clause 34.2, till the 28 child / children are delivered to the foreigner or foreign couple or the local guardian. Further, the party seeking the surrogacy must ensure and establish to the ART clinic through proper documentation that the party would be able to take the child / children born through surrogacy, including where the embryo was a consequence of donation of an oocyte or sperm, outside of India to the country of the party’s origin or residence as the case may be. (p28)
There are many questions asked about this in other forums. Is there any or no direct interaction between the surrogate mother and parents?
22) A couple or an individual shall not have the service of more than one surrogate at any given time. (p28)
Curious to know the reason.
23) Determination of status of the child:
A child born to a married couple through the use of assisted reproductive technology shall be presumed to be the legitimate child of the couple, having been born in wedlock and with the consent of both spouses, and shall have identical legal rights as a legitimate child born through sexual intercourse. (2) A child born to an unmarried couple through the use of assisted reproductive technology, with the consent of both the parties, shall be the legitimate child of both parties. (3) In the case of a single woman the child will be the legitimate child of the woman, and in the case of a single man the child will be the legitimate child of the man (p28)
a) In all these contexts, what if parties die, God forbid this, but death is a possibility during this period, what happens to the child then? In the draft I found reference to death only in the section which contains consent forms, essentially blanks for names of persons, see page 93, 133. The blanks, as I understand, are for the names (as it is a contract form). They cover the couple and/or the local guardian.
b) The wording that they are legally bound is reassuring but needs clearer identification especially if that person is located in some foreign country?
c) Are unmarried couples recognized in India?
This begs a broader question: is the Draft Bill in accordance with Indian laws governing marriage, divorce, homosexuality and children born out of wedlock? For example, if homosexuality or same-sex marriage is illegal in India (this needs confirmation, with the article and section of the Constitution), then how are same sex couples allowed to be parents of the child?
24) In the case of divorce of surrogacy seeking parents:
In case a married or unmarried couple separates or gets divorced, as the case may be, after both parties consented to the assisted reproductive technology treatment but before the child is born, the child shall be the legitimate child of the couple. (p29)
25) Rights of the child born by surrogate other:
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 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. (p69)
What about surrogate mothers rights, it is assumed that she will be ok with a child turning up at her house 18 years later?
This is Hari, Partner Indian Surrogacy Law Centre, indiansurrogacylaw.com. (site is not yet completed)
I am happy about this kind of discussion activity going on here. To be very frank about the Draft Bill, it is one of the most ill drafted bills ever. In fact, it is just another mirror copy of the ICMR guidelines, 2005. It is hard to say that the bill has got any worth to even point out the infirmities in it. It merely seems like a business plan.
This article talks about so many ethical aspects. Being a lawyer, I can see hundreds of glaring contradictions in the bill. There is no coherence. The bill fails to address so many issues which are much required. In fact, the stress on so many other things. I would love to have a discussion with the author of this article. I can contacted at grhari@indiansurrogacylaw.com.
It was interesting to read this post and the original article. I would like to list some issues that arose in my mind.
1. If the surrogate mother is in need of legal recourse, is there any agency that will provide the same to her? I was wondering if Indian surrogacy law (see first comment) is a NGO that serves this purpose?
2. Surrogate motherhood is a relatively new phenomenon in India. Unless the judiciary keeps up with the medical advances relevant to this field, legal issues will be murky. Laws regarding various issues such as abortion, paternity, medical insurance etc need to be reexamined and updated.
3. Is the surrogate mother free to live as she wants, travel as needed? What is the extent of control that the clinic and/or the couple seeking the child exercise on her daily life?
4. In case of the death of the foetus is deemed accidental, there will be legal issues as to who was responsible. In absence of proper legal help, the surrogate mother will easily be blamed for it and will have to forefeit the compensation. The clinics will obviously have better legal help.
5. There has to be some regulation on the minimum compensation to be paid for the surrogate services. In absence of a minimum compensation, exploitation is all too easy. Similarly, there has to be some regulation about how much a clinic can charge for the services. They are obviously the principal profit makers in this contract.
6. Are there any specifications about the minimum standards or facilities that a clinic must posess in order to be permitted to facilitate surrogate childbirth? They should not be allowed to be “dealt with” along with regular Ob-gyn services.
7. Are there any standards on what kind of doctors are permitted to participate in the surrogate child births? Are just Ob-Gyn specializations enough or experience with embryo transfer technology mandatory?
In one of responses to the original article, I read with interest the list of authors of the draft bill. There is a significant number of representatives of government and private clinics. Without argument, the clinics stand to benefit the most monetarily. It is quite clear that they are a strong force behind the passing this bill in a hurry without including womens’ organisation and any public debate.
With regard to the second comment,
ISLC – Indian Surrogacy Law Centre is a specialist legal consultancy firm working in the field of the surrogacy. Our usual course of work includes providing legal counsellings to the surrogates, making them aware of their rights, thereby working against exploitation of the Surrogates and making sure that the Surrogates are paid their money.
With regard to the second question, You are absolutely right. The Governement cannot simply enact this sort of an Act. This Act does not contain any specificity. It requires a lot of correction. My firm is coming up with a report on the corrections to be made. It shall soon be available at our website.
Thirdly, some clinics in India do the work of fixing of the surrogate and taking care of her during the gestating period. Well, This is totally prohibited by the ICMR Guidelines, 2005. Moreover, only Law firms, Sprem Banks and other independent body can advertise for a surrogate. The ART Clinics should not get into the monetary transactions with the Surrogate.
In the case of death of the foetus, it is a serious matter and the usual laws shall apply.
In any case, litigations on this subject are to expected on a massive scale very soon.
Please see the link >
http://beware-of-the-fertility-industry.blogspot.com
[Hari] Welcome! And great to have the discussion on.
Thanks for addressing parts in comment 2. I am running late with the next post hope to have out by Saturday, and would really need help from informed people such as you, to wade through that. It will be about my concerns in : FORM – J Agreement for Surrogacy (See Rule 15.1) (p91 of the draft bill)
[Hashis] Questions, and they keep coming, don’t they?
.>>2. Is the surrogate mother free to live as she wants, travel as needed? What is the extent of control that the clinic and/or the couple seeking the child exercise on her daily life?
The voluntary ones are usually family members and surely are well taken care off. This question is therefore for the commercial surrogate mothers, right? The draft does not address or maybe presumes that her basic human rights will not be violated. Going by some of the bold proclamations of agencies advertising surrogacy services, “taking care” of the mother during this period, would put me on high alert. Some of those ‘taking care’ almost sounds like a human farm, for birthing babies that have been prepaid for. Makes me ill.
For our purpose, I will move these kind of questions as ‘vital issues not addressed in the draft’ until someone comes up with a better terminology.
>>5. There has to be some regulation on the minimum compensation to be paid for the surrogate services. In absence of a minimum compensation, exploitation is all too easy. Similarly, there has to be some regulation about how much a clinic can charge for the services. They are obviously the principal profit makers in this contract.
I would simply say follow international prices, make it $ 20,000 -25,000, a human baby born of surrogate mothers in the developing or developed countries is still a human baby, right? Using the very same technologies and expertise, right? So why should the Indian woman’s services be compensated with lesser amount. Of course do not forget even now the money earned is mostly going to the clinics not to the mother, so if you hike the price I guess, they will get more vicious in cheating the mothers. The other side of the coin is what is interesting, with equitable pricing, no foreigner will head here, as the cost of travel and associated expenses will nullify their quest in developing countries.
Anyway, will move your query to that vague section in the bill, that addresses compensation.
Will get to queries 6 and 7 sometime today. And yes the expert committee. This is going to be separate post probably part III.
[Stella] Did and thanks.
Hello Anu,
I would be interested in helping you on that “vital issues not addressed in the draft.” In fact, I have a compilation of the foreign laws put together by my research team. I can have them helping you.
The agreement for surrogacy, Form J is merely another consent form which has been drafted for the welfare of the ART Clinics. It is verbatim copying of the Form 4.7 from the ICMR guidelines.
The simple reading will expose the first factor, that it is just an unilateral statement made by the surrogate. The ART clinic merely endorses her statement. This agreement is entered into for the protection of the Hospitals and none else. The surrogate, in most cases would not be able to read english and therefore the agreement have to be made in the vernacular language of the surrogate. The surrogate needs to explained of the legal aspects of what she is entering into. She must be made aware of the everything that she is agreeing to.
There have been US cases where the surrogate was some other land, was brought to US for being a surrogate and she was never explained abt the contract or anything. She filed a case for custody of the child, stating that she never knew that she was to hand over the child after its birth. The Court ordered visiting rights for the surrogate mother.
This is not the surrogacy agreement. The clauses in the surrogacy agreement is another important aspect which has to be taken care of.
Hari, that would be wonderful. A bunch of us from medical and non medical fields are trying to understand what is in the draft. While this part of the draft is of interest to me, others are tearing apart the different aspects such as egg donations, the hospital criteria addressed and not addressed in the draft. So, all help is welcome. Thanks again.
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.
I am puzzled with your last comment. Well, a visual medium will aid who??
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.
Verbal counseling vs visual counseling of medical situations that might arise due to ones participation in ART procedure (say embryo transfer/carrying multiple babies to term) is what I am getting at.
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.
This seems to be a good idea. I can add visual media to my working. It will help surrogates better.
Thank you for that wonderful thought. I can see you have thought deep on these aspects.
It is really gratifying to see that our article has led to such responsible and critical discussions on the proposed ARTs Bill. May I suggest that Anu and others ensure that some of this get back to the ICMR and the Health Ministry, since they have been pressurised to take feedback seriously?
regards
mary
Regarding some of the points raised
2. “What about tests for Genetic disorders?”
Contract between the Semen Bank and the ART Clinic
(See Rule 15.1)
3. The Bank shall ensure that the sperm / egg donor is free from HIV and
hepatitis B and C, infections, hypertension, diabetes, sexually transmitted
diseases, and identifiable and common genetic disorders such as
thalassemia.
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/
[ARTpatient] welcome to this blog and the discussion!
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.
>>2. “What about tests for Genetic disorders?”Contract between the Semen Bank and the ART Clinic (See Rule 15.1)
3. …………………. and identifiable and common genetic disorders such as thalassemia.
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.
The draft mentions thalassemia as an example – “identifiable and common genetic disorders such as thalassemia.”, not as the sole disorder to be identified.
BTW, not all of the gd you mentioned can be easily tested in India.
PGD can check for a single gene disorder at a time by removing and testing a cell from an early embryo, not the entire spectrum of gd in the world.It is done to check for a gd when one of the parents is a carrier.
Take DMD(duchennes) for ex. Its an x-linked disorder.Firstly,If the egg donor has had a son,father or brother,who is affected or if the sperm donor is affected by dmd, it would be mentioned in the form and it is highly unlikely they would be selected as donors.The surrogate of course, does not contribute to the childs dna and so a gd in her would not affect the child.
Of course, none of these checks are enforced on natural conceptions either, nor are they necessarily available if you wish to go in for adoption.
My Husbands great-grandmother had 14 children and 6 miscarriages. Nobody restricetd her reproductive rights then and a century later, fertile women can still exercise the option to get pregnant as many times as they want for their own children. The govt. may have norms and guidelines but not laws barring pregnancies. So maybe the woman herself and the doctor should be the best judge for how many pregnancies she is ready to go through.