Annie
03-22-2009, 01:37 PM
Public health safety trumps confidentiality
By Brian Seaman, research associate, Alberta Civil Liberties Research Centre
10/03/2009,
http://www.winnipegfreepress.com/opinion/westview/public_health_safety_trump
s_confidentiality-41011777.html
On Oct. 23, 2008, Olivia Pratten, a 26-year-old British Columbia woman, filed a lawsuit that is unique in its subject matter: She is seeking access to the identity and medical/social history of an unknown, to her, medical student who donated sperm at least 27 years ago, which was then placed in cold storage in a doctor's office.
That donor's DNA accounts for half the genes in Olivia Pratten's body. She wants to know who he is and his medical history for reasons of personal identity, equality and the need to know her full genetic history.
Olivia has known ever since she was a young girl that she came into the world differently from most other people: Her parents never hid the truth from her about how she was made. Their physician suggested anonymous donor conception as an alternative path to parenthood because of her father's infertility.
The secrecy regarding donor information seems to violate the equality rights of thousands of Canadians conceived through assisted human reproduction. While there is also secrecy regarding the identities of biological parents in adoption cases, adopted children may, in accordance with legislation in B.C. and other provinces, access their records when the health, safety or well-being of the child is at stake. To deny access in cases of
donor-conceived children represents discrimination by mode of conception and is, arguably, illegal discrimination contrary to the equality provision, Sec. 15, of the Canadian Charter of Rights and Freedoms.
Increasingly these days, family is a social construct: Current legal definitions of parent or guardian recognize different social realities; there are blended families where partners bring children from a previous marriage; there are children adopted or brought into the world by heterosexual or same-sex couples. Some single people also opt to adopt or have children as well.
A genetic predisposition to life-limiting conditions -- such as cystic fibrosis, sickle-cell anemia, Huntington's disease, or Tay-Sachs disease -- is not, however, a social construct but empirical reality, which lies in genes on a chain of human DNA. And, as such, these conditions are capable of being passed on to a new baby, whether she or he is the result of copulation, in vitro fertilization, or from donated sperm or ova. It is for these reasons that donor offspring must know their full genetic history. Health-care professionals have a legal and ethical obligation to maintain strict confidentiality of their patients' health records. However, there are certain exceptions where, in accordance with law, threats to public health or safety will trump this obligation. For example, if a patient has a serious communicable disease such as hepatitis or is HIV positive, the disease or condition as well as the identifying information of the patient must be reported to public health authorities. Another example: If a patient is threatening to kill another person such information must be communicated to the police.
Less clear, and thus still a matter for litigation, are those instances where genetic screening of a patient for a condition such as Huntington's disease, for example, yields the gene responsible for that condition. Does the physician notify the patient's family, if the patient has indicated that he or she does not wish to disclose such information?
In any event, the traditional stance of physicians and clinics offering assisted human reproductive services to assert confidentiality over donor information should not apply as far as the genetic/medical and social histories of such donors go. Confidentiality is supposed to apply to patient records.
In the case of a woman seeking to become pregnant through donated sperm or an egg, who is the patient? It is not "Sperm Donor Y" or "Egg Donor X."
Surely, a prospective mother should be first in line to assert a right to know, at the very least, the genetic/medical and social history of the person who is contributing half the genes to her future child.
Furthermore, those thousands of Canadians who came into the world thanks to donations of sperm or ova have a right to know, at the very least, the genetic/medical and social histories of such donors. It is a misapplication of the ethical duty of patient confidentiality to deny parents and donor-conceived children access to this information. It also violates the right to personal security guaranteed by Sec. 7 of the Charter.
Knowledge of genetic history is vital because it will influence the choices a person makes in life, not the least of which is whether to bring another child into the world.
By Brian Seaman, research associate, Alberta Civil Liberties Research Centre
10/03/2009,
http://www.winnipegfreepress.com/opinion/westview/public_health_safety_trump
s_confidentiality-41011777.html
On Oct. 23, 2008, Olivia Pratten, a 26-year-old British Columbia woman, filed a lawsuit that is unique in its subject matter: She is seeking access to the identity and medical/social history of an unknown, to her, medical student who donated sperm at least 27 years ago, which was then placed in cold storage in a doctor's office.
That donor's DNA accounts for half the genes in Olivia Pratten's body. She wants to know who he is and his medical history for reasons of personal identity, equality and the need to know her full genetic history.
Olivia has known ever since she was a young girl that she came into the world differently from most other people: Her parents never hid the truth from her about how she was made. Their physician suggested anonymous donor conception as an alternative path to parenthood because of her father's infertility.
The secrecy regarding donor information seems to violate the equality rights of thousands of Canadians conceived through assisted human reproduction. While there is also secrecy regarding the identities of biological parents in adoption cases, adopted children may, in accordance with legislation in B.C. and other provinces, access their records when the health, safety or well-being of the child is at stake. To deny access in cases of
donor-conceived children represents discrimination by mode of conception and is, arguably, illegal discrimination contrary to the equality provision, Sec. 15, of the Canadian Charter of Rights and Freedoms.
Increasingly these days, family is a social construct: Current legal definitions of parent or guardian recognize different social realities; there are blended families where partners bring children from a previous marriage; there are children adopted or brought into the world by heterosexual or same-sex couples. Some single people also opt to adopt or have children as well.
A genetic predisposition to life-limiting conditions -- such as cystic fibrosis, sickle-cell anemia, Huntington's disease, or Tay-Sachs disease -- is not, however, a social construct but empirical reality, which lies in genes on a chain of human DNA. And, as such, these conditions are capable of being passed on to a new baby, whether she or he is the result of copulation, in vitro fertilization, or from donated sperm or ova. It is for these reasons that donor offspring must know their full genetic history. Health-care professionals have a legal and ethical obligation to maintain strict confidentiality of their patients' health records. However, there are certain exceptions where, in accordance with law, threats to public health or safety will trump this obligation. For example, if a patient has a serious communicable disease such as hepatitis or is HIV positive, the disease or condition as well as the identifying information of the patient must be reported to public health authorities. Another example: If a patient is threatening to kill another person such information must be communicated to the police.
Less clear, and thus still a matter for litigation, are those instances where genetic screening of a patient for a condition such as Huntington's disease, for example, yields the gene responsible for that condition. Does the physician notify the patient's family, if the patient has indicated that he or she does not wish to disclose such information?
In any event, the traditional stance of physicians and clinics offering assisted human reproductive services to assert confidentiality over donor information should not apply as far as the genetic/medical and social histories of such donors go. Confidentiality is supposed to apply to patient records.
In the case of a woman seeking to become pregnant through donated sperm or an egg, who is the patient? It is not "Sperm Donor Y" or "Egg Donor X."
Surely, a prospective mother should be first in line to assert a right to know, at the very least, the genetic/medical and social history of the person who is contributing half the genes to her future child.
Furthermore, those thousands of Canadians who came into the world thanks to donations of sperm or ova have a right to know, at the very least, the genetic/medical and social histories of such donors. It is a misapplication of the ethical duty of patient confidentiality to deny parents and donor-conceived children access to this information. It also violates the right to personal security guaranteed by Sec. 7 of the Charter.
Knowledge of genetic history is vital because it will influence the choices a person makes in life, not the least of which is whether to bring another child into the world.