Friday, March 21, 2003
my draft submission to this inquiry into donor embys/gametes.
I have been told that submissions on the guidelines are confidential, and specifically request that my name and address be separated from my comments and only used when absolutely necessary for administrative matters.
My husband and I have been with Melbourne IVF and have eight frozen embryos in storage until late 2007, when Victorian law will require us to use or dispose of them.
We anticipate that there will be several embryos still in storage when we have completed our family, and that we will be in a position to either donate them for use in fertility treatment or research.
As a potential donor and someone who obviously has a direct interest in the ART rules, I have several comments to make:
1/ time limits on donation decisions (guideline 9.4 and 9.7)
- The current Victorian time limit on use of embryos, and the proposed 10-year limit has no medical reasoning behind it, as embryos have been used successfully ten and more years after freezing. Allowing couples to store embryos for longer would not only remove unnecessary pressures to complete our families hastily, it could reduce the risk of Down’s syndrome children – eg if a 27 year old woman created embryos and could use them to complete her family at 39, especially if having several children, her Down’s risk would not increase with her age. The ten year limit seems arbitrary and an unnecessary interference with potential parents’ freedom of choice, a freedom they would have if they did not require ART assistance.
- extending the time would make it easier for us to make a donation decision. My feeling is that if women were allowed to reach the end of their childbearing years before having to decide what to do with stored embryos, they might be more likely to donate them.
2/ rules on identity and embryos/gametes donated (guideline 10 and 11.4)
The proposed rules seem too much of a “one way street” to me. While I understand the right of children created by donation of gametes or embryos to privacy, there ought to be a way of identifying the parents and siblings of such a child without using their name, to reduce the risk of incest; I’m aware that many women in Victoria’s lesbian community travel to the same NSW clinic for sperm donation, meaning that many of their children, who will grow up in close contact with each other, will be half-siblings. A simple ID code would solve this problem
As likely parents of our own children, we are concerned at the risk of disruption to our family by any children created by donation. Specifically, we would like to see the law clarify that there are no legal claims such a child could make on us or their siblings. The guideline also commits donors to identification of any future siblings; when you consider that in the case of embryo donation this may mean half-siblings if donor parents re-partner, it could lead to invasion of the rights of the new partner.
Identity is certainly a key issue for children created in this way; however, whether this requires the child to have the right to know and contact its biological parents isn’t entirely clear to me. The phrase “entitled to know” is questionable, despite its emotional appeal. I would be willing, for instance, to provide a detailed dossier of health information, including the right to access future health records, and to provide some personal details, but the idea that a child whose upbringing we have no control over could appear to disrupt our own children’s lives in the future is probably the main disincentive to donating. This may seem cruel, but I feel the biological parents should have some choice in the matter, possibly by creating a mediation agency via which we could get some idea of the child who wishes to know our identity before it happens. For donated children, the choice may be between not being able to insist on knowing the exact identify of its biological parents, or not being born at all.
Simply “identifying” biological parents is pointless if those parents then decline to provide health information and have contact with children created; the voluntary system described, mediated properly, with rights to substantial nonidentifying information, would be a far better solution.
3/ deceased donors (guideline 10.13.)
I don’t see the reasoning behind banning donation by deceased persons. A donor could die at any time, and the issue should be the quality and likelihood of success in the case of embryos.
I would be happy, for instance, for my stored embryos to be donated by my husband if he saw fit, particular for family donations described below, and would be willing to be counselled and sign appropriate forms to this end.
4/ Family donations (guideline 10.16)
I note that the guidelines say that donations within a family be closely counselled. While I agree with the need for some counselling, I would question that such a practice should be discouraged. Within our family there is one female relative undergoing IVF who may at some stage benefit from such a donation, and another who is unlikely for reasons of sexual orientation to fall pregnant naturally; if we chose to donate to these women it would be a good solution to the problem of anonymous donors, rather than them using donors they don’t know and whose biological offspring may not fit into their families as well for various genetic reasons – in other words, some recipients may prefer donated embryos/gametes which will produce children who look like them and share family characteristics. Some donors, like ourselves, would also be far more comfortable knowing the environment that any child created from donation would be entering, as we would feel partly responsible for such a child’s existence.
5/ “on-donating” (guideline 11.7)
On my reading of the guidelines, it seems that once a donation is made, the recipient could, notwithstanding guideline 11.9, decide to alter its purpose, eg donate an embryo to research (even non-destructive research) when the donor’s purpose was fertility treatment, or on-donation to a different person. I would like to object strongly to this, as I feel it undermines the incentive to donate, and to some people who feel that embryos are “human”, would prevent donation altogether. If the original purposes lapses, decision rights should revert to the donor(s).
I have been told that submissions on the guidelines are confidential, and specifically request that my name and address be separated from my comments and only used when absolutely necessary for administrative matters.
My husband and I have been with Melbourne IVF and have eight frozen embryos in storage until late 2007, when Victorian law will require us to use or dispose of them.
We anticipate that there will be several embryos still in storage when we have completed our family, and that we will be in a position to either donate them for use in fertility treatment or research.
As a potential donor and someone who obviously has a direct interest in the ART rules, I have several comments to make:
1/ time limits on donation decisions (guideline 9.4 and 9.7)
- The current Victorian time limit on use of embryos, and the proposed 10-year limit has no medical reasoning behind it, as embryos have been used successfully ten and more years after freezing. Allowing couples to store embryos for longer would not only remove unnecessary pressures to complete our families hastily, it could reduce the risk of Down’s syndrome children – eg if a 27 year old woman created embryos and could use them to complete her family at 39, especially if having several children, her Down’s risk would not increase with her age. The ten year limit seems arbitrary and an unnecessary interference with potential parents’ freedom of choice, a freedom they would have if they did not require ART assistance.
- extending the time would make it easier for us to make a donation decision. My feeling is that if women were allowed to reach the end of their childbearing years before having to decide what to do with stored embryos, they might be more likely to donate them.
2/ rules on identity and embryos/gametes donated (guideline 10 and 11.4)
The proposed rules seem too much of a “one way street” to me. While I understand the right of children created by donation of gametes or embryos to privacy, there ought to be a way of identifying the parents and siblings of such a child without using their name, to reduce the risk of incest; I’m aware that many women in Victoria’s lesbian community travel to the same NSW clinic for sperm donation, meaning that many of their children, who will grow up in close contact with each other, will be half-siblings. A simple ID code would solve this problem
As likely parents of our own children, we are concerned at the risk of disruption to our family by any children created by donation. Specifically, we would like to see the law clarify that there are no legal claims such a child could make on us or their siblings. The guideline also commits donors to identification of any future siblings; when you consider that in the case of embryo donation this may mean half-siblings if donor parents re-partner, it could lead to invasion of the rights of the new partner.
Identity is certainly a key issue for children created in this way; however, whether this requires the child to have the right to know and contact its biological parents isn’t entirely clear to me. The phrase “entitled to know” is questionable, despite its emotional appeal. I would be willing, for instance, to provide a detailed dossier of health information, including the right to access future health records, and to provide some personal details, but the idea that a child whose upbringing we have no control over could appear to disrupt our own children’s lives in the future is probably the main disincentive to donating. This may seem cruel, but I feel the biological parents should have some choice in the matter, possibly by creating a mediation agency via which we could get some idea of the child who wishes to know our identity before it happens. For donated children, the choice may be between not being able to insist on knowing the exact identify of its biological parents, or not being born at all.
Simply “identifying” biological parents is pointless if those parents then decline to provide health information and have contact with children created; the voluntary system described, mediated properly, with rights to substantial nonidentifying information, would be a far better solution.
3/ deceased donors (guideline 10.13.)
I don’t see the reasoning behind banning donation by deceased persons. A donor could die at any time, and the issue should be the quality and likelihood of success in the case of embryos.
I would be happy, for instance, for my stored embryos to be donated by my husband if he saw fit, particular for family donations described below, and would be willing to be counselled and sign appropriate forms to this end.
4/ Family donations (guideline 10.16)
I note that the guidelines say that donations within a family be closely counselled. While I agree with the need for some counselling, I would question that such a practice should be discouraged. Within our family there is one female relative undergoing IVF who may at some stage benefit from such a donation, and another who is unlikely for reasons of sexual orientation to fall pregnant naturally; if we chose to donate to these women it would be a good solution to the problem of anonymous donors, rather than them using donors they don’t know and whose biological offspring may not fit into their families as well for various genetic reasons – in other words, some recipients may prefer donated embryos/gametes which will produce children who look like them and share family characteristics. Some donors, like ourselves, would also be far more comfortable knowing the environment that any child created from donation would be entering, as we would feel partly responsible for such a child’s existence.
5/ “on-donating” (guideline 11.7)
On my reading of the guidelines, it seems that once a donation is made, the recipient could, notwithstanding guideline 11.9, decide to alter its purpose, eg donate an embryo to research (even non-destructive research) when the donor’s purpose was fertility treatment, or on-donation to a different person. I would like to object strongly to this, as I feel it undermines the incentive to donate, and to some people who feel that embryos are “human”, would prevent donation altogether. If the original purposes lapses, decision rights should revert to the donor(s).
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