Donor registration

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Donor registration facilitates donor conceived people, sperm donors and egg donors to establish contact with genetic kindred. Registries are mostly used by donor conceived people to find out their genetic heritage and to find half-siblings from the same egg or sperm donor. In some jurisdictions donor registration is compulsory, while in others it is voluntary; but most jurisdictions do not have any registration system.

Contents

Types of registries

There are registries of the fertility clinics etc. as well as independent registries.

Clinic registries

Fertility clinics etc. keep registries of donors and receivers. The donor number is generally available to the donor as well as the receivers. On the other hand, a donor doesn't generally know which receivers that are linked to his/her donor number, and the receivers don't generally know the true identity behind the donor number.

In the case of non-anonymous donors, the donor conceived people may know the true identity of the donor behind the donor number.

Independent registries

Since clinic registries are often very limited, independent registries may be more efficient in finding genetic kindred.

Some donors are non-anonymous, but most are anonymous, i.e. the donor conceived person doesn't know the true identity of the donor. Still, he/she may get the donor number from the fertility clinic. If that donor had donated before, then other donor conceived people with the same donor number are thus genetic half-siblings. In short, donor registries matches people who type in the same donor number.

Alternatively, if the donor number isn't available, then known donor characteristics, e.g. hair, eye and skin color may be used in matching siblings.

Donors may also register, and therefore, donor registries may also match donors with their genetic children.

Private registries

Sperm banks keep their own records of sperm donors and recipients, although there may not be any obligation to save them unless there is non-anonymous sperm donation, let alone any obligation to reveal them for donor conceived people who want to know about their genetic history.

In the US there is increased pressure on sperm banks to make donor information available to donor conceived people, for example by creating a collaborative private registry between sperm banks. [1] Without such initiative, it may lead to a government driven registry that sperm banks and clinics must report to. [1]

International registration standards

Some countries have established laws concerning the registration of donors, others permit states to regulate this or have no regulation.

Australia

In Australia, health issues are the responsibility of the states and territories. In Victoria, donor registers are maintained by the Victorian Assisted Reproductive Treatment Authority (VARTA) (until 2010 called the Infertility Treatment Authority). [2] [3] Donor registration is compulsory and donors agree to release identifying information to the donor child when they reach 18 years of age. Some other states, such as Western Australia, have a voluntary register on which donors and recipients may register their details.

New Zealand

In New Zealand the Human Assisted Reproductive Technology Act 2004 established compulsory registration of donors and their offspring born from donations made after 22 August 2005. Fertility clinics must inform the Registrar of Births Deaths and Marriages that a donor offspring has been born, and give the Registrar identifying details about the donor, offspring and clinic. Non-identifying details about the donor must be retained by the fertility clinic for 50 years or until the clinic closes, when they are transferred to the Registrar.

Information from clinics and the Registrar may be released to donors, donor offspring and their parents, and medical professionals. However, there are restrictions on releasing identifying details about donor offspring until they turn 18 years old (16 years old with permission of the Family Court).

The Registrar of Births Deaths and Marriages maintains a second voluntary register detailing donor and donor offspring arising from donations prior to 22 August 2015.

Sweden

As in Austria, donor registration is a task for each region, in Sweden: county. Thus, any official fertility clinic cannot know if a donor has donated in other places within the country as well.

The Personal Data Act [4] regulates donor/sibling registries in Sweden. For instance, personal data may mostly not be handed out unless there is consent from that person, and this might include donor codes, although only the clinic itself can link it directly with that donor. However, they may still indirectly link to the donor, and therefore, it is not certain that clinics are willing to deliver donor codes. Furthermore, even if the organization is availed the data, then, by the same law, such an organization has huge responsibilities. For instance:

United Kingdom

In the United Kingdom, the Human Fertilisation and Embryology Authority (HFEA) has a central register of people conceived using gamete donation after 1 August 1991. People conceived using donations made after 1 April 2005 will have the right to know who their donor was when they turn 18. [5] UK Donorlink was a Department of Health Funded voluntary register for people conceived before 1 August 1991 and for their donors. [6]

See also

Related Research Articles

In vitro fertilisation Assisted reproductive technology procedure

In vitro fertilisation (IVF) is a process of fertilisation where an egg is combined with sperm outside the body, in vitro. The process involves monitoring and stimulating a person's ovulatory process, removing an ovum or ova from their ovaries and letting sperm fertilise them in a culture medium in a laboratory. After the fertilised egg (zygote) undergoes embryo culture for 2–6 days, it is implanted in the same or another person's uterus, with the intention of establishing a successful pregnancy.

Artificial insemination Pregnancy through in vivo fertilization

Artificial insemination (AI) is the deliberate introduction of sperm into a female's cervix or uterine cavity for the purpose of achieving a pregnancy through in vivo fertilization by means other than sexual intercourse or in vitro fertilisation. It is a fertility treatment for humans, and is common practice in animal breeding, including dairy cattle and pigs.

Human Fertilisation and Embryology Authority

The Human Fertilisation and Embryology Authority (HFEA) is an executive non-departmental public body of the Department of Health and Social Care in the United Kingdom. It is a statutory body that regulates and inspects all clinics in the United Kingdom providing in vitro fertilisation (IVF), artificial insemination and the storage of human eggs, sperm or embryos. It also regulates human embryo research.

Assisted reproductive technology

Assisted reproductive technology (ART) includes medical procedures used primarily to address infertility. This subject involves procedures such as in vitro fertilization (IVF), intracytoplasmic sperm injection (ICSI), cryopreservation of gametes or embryos, and/or the use of fertility medication. When used to address infertility, ART may also be referred to as fertility treatment. ART mainly belongs to the field of reproductive endocrinology and infertility. Some forms of ART may be used with regard to fertile couples for genetic purpose. ART may also be used in surrogacy arrangements, although not all surrogacy arrangements involve ART.

Embryo donation is one disposition option for users of in vitro fertilisation with remaining fresh or frozen embryos. It is defined as the giving—generally without compensation—of embryos remaining after in vitro fertilization procedures to recipients for procreative implantation or research. Most IVF users with supernumerary embryos make embryo donation decisions after completing their families or discontinuing use of in vitro fertilization. Recipients of embryos donated for procreative implantation typically plan to transfer fresh or frozen embryos into a prepared uterus in order to facilitate pregnancy and childbirth. Recipients of embryos donated for research typically use them for clinical training, quality improvement research, or human embryonic stem cell research.

A sperm bank, semen bank or cryobank is a facility or enterprise which purchases, stores and sells human semen. The semen is produced and sold by men who are known as sperm donors. The sperm is purchased by or for women for the purpose of achieving a pregnancy or pregnancies other than by a sexual partner. Sperm sold by a sperm donor is known as donor sperm. Sperm is introduced into the recipient woman by means of artificial insemination or by IVF and the process may also involve donated eggs or the use of a surrogate.

Egg donation is the process by which a woman donates eggs to enable another woman to conceive as part of an assisted reproduction treatment or for biomedical research. For assisted reproduction purposes, egg donation typically involves in vitro fertilization technology, with the eggs being fertilized in the laboratory; more rarely, unfertilized eggs may be frozen and stored for later use. Egg donation is a third party reproduction as part of assisted reproductive technology.

A donor offspring, or donor conceived person, is conceived via the donation of sperm or ova, or both.

Fertility clinic

Fertility clinics are medical clinics that assist couples, and sometimes individuals, who want to become parents but for medical reasons have been unable to achieve this goal via the natural course. Clinics apply a number of diagnosis tests and sometimes very advanced medical treatments to achieve conceptions and pregnancies.

The National Gamete Donation Service (NGDS) raises awareness of the national shortage of sperm, egg and embryo donors in the UK. Its aim is to recruit donors to alleviate the shortage, and it provides information on egg, sperm and embryo donation and donor recruitment in the UK.

Human Fertilisation and Embryology Act 1990 United Kingdom legislation

The Human Fertilisation and Embryology Act 1990 is an Act of the Parliament of the United Kingdom. It created the Human Fertilisation and Embryology Authority which is in charge of human embryo research, along with monitoring and licensing fertility clinics in the United Kingdom.

Donor Sibling Registry

The Donor Sibling Registry is a website and non-profit US organization serving donor offspring, sperm donors, egg donors and other donor conceived people. It was founded in September 2000 by a mother-and-son team, Wendy Kramer and Ryan Kramer of Nederland, Colorado.

Sperm donation laws vary by country. Most countries have laws to cover sperm donations which, for example, place limits on how many children a sperm donor may give rise to, or which limit or prohibit the use of donor semen after the donor has died, or payment to sperm donors. Other laws may restrict use of donor sperm for in vitro fertilisation (IVF) treatment, which may itself be banned or restricted in some way, such as to married heterosexual couples, banning such treatment to single women or lesbian couples. Donated sperm may be used for insemination or as part of IVF treatment. Notwithstanding such laws, informal and private sperm donations take place, which are largely unregulated.

The Birmingham Women's Fertility Centre at Birmingham Women’s Hospital, Birmingham, England is one of the UK's leading medical centres for infertility treatment and care. It is the longest established fertility clinic in the Midlands, marking thirty years operations in the year 2010. The clinic is based in an NHS hospital and provides integrated care to both NHS and private patients; the staff is internationally recognised for their work in treating with infertility. The clinic runs active programmes of egg-sharing, sperm donation and egg-donation.

Fertility tourism is the practice of traveling to another country or jurisdiction for fertility treatment, and may be regarded as a form of medical tourism. One can usually be considered as having fertility issues when they are unable to have a clinical pregnancy after 12 months of attempts with intercourse. Infertility, or the inability to get pregnant, affects about 8-12% of couples looking to conceive or 186 million people globally. In some places, rates of infertility surpass the global average and can go up to 30% depending on the country. Areas with lack of resources, such as assisted reproductive technologies (ARTs), tend to correlate with the highest rates of infertility.

Sperm donation is the provision by a man of his sperm with the intention that it be used in the artificial insemination or other 'fertility treatment' of a woman or women who are not his sexual partners in order that they may become pregnant by him.

Mitochondrial replacement therapy is the replacement of mitochondria in one or more cells to prevent or ameliorate disease. MRT originated as a special form of in vitro fertilisation in which some or all of the future baby's mitochondrial DNA comes from a third party. This technique is used in cases when mothers carry genes for mitochondrial diseases. The therapy is approved for use in the United Kingdom. A second application is to use autologous mitochondria to replace mitochondria in damaged tissue to restore the tissue to a functional state. This has been used in clinical research in the United States to treat cardiac-compromised newborns.

Accidental incest is sexual activity or marriage between persons who were unaware of a family relationship between them which would be considered incestuous.

Onselling of sperm is the practice of a sperm bank selling or otherwise trading or passing its surplus stocks of sperm for use by another entity. The practice is subject to the laws of particular jurisdictions involved in the trade. Sperm banks routinely collect and process sperms from sperm donors which they may use either in fertility treatments or onsell or otherwise pass on to another entity. The onselling may be part of, or even the main business of a particular sperm bank, or may arise where a sperm bank has collected and stored more sperm than it can use within nationally set limits. In the latter case a sperm bank may onsell or export the sperm from a particular donor that it can no longer use within the jurisdiction in which it operates, for use in another jurisdiction, subject to relevant laws. In practice, wherever possible, a sperm bank will use or sell on all the samples stored from a particular donor. Sperm banks which limit the use of a donor's samples within its own jurisdiction, or to a particular number of births, will generally limit the time for which a man may donate his sperm to obtain only the number of samples they intend to use.

Mary Barton was a British obstetrician who, in the 1930s, founded one of the first fertility clinics in England to offer donor insemination. Throughout her career, Barton studied infertility and conception. Her pioneering research and practice were inspired by experience as a medical missionary in India, where she saw the harsh treatment of childless women.

References

  1. 1 2 Reason Magazine: Who's Your Daddy? by Cheryl Miller, February 2009
  2. ↑ Assisted Reproductive Treatment Act 2008
  3. ↑ registers in Victoria, Australia Archived February 26, 2008, at the Wayback Machine
  4. ↑ Personal Data Act
  5. ↑ HFEA Register Archived October 26, 2007, at the Wayback Machine
  6. ↑ UK Donorlink. This service was replaced when it was transferred to the National Gamete Donation Trust (NGDT) in April 2014 and is now called the Donor Conceived Register http://www.donorconceivedregister.org.uk/
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