Family planning options for HD-free kids: Adoption and donors

Wednesday, July 29, 2015


By Shawna Feely, MS, CGC
UI HDSA COE Genetic Counselor, and
Carly Siskind, MS, LCGC
Stanford School of Medicine, Neuromuscular Disorders Program

In our previous article, we presented options that people with Huntington disease have to become biological parents without passing HD on to their children. These options, such as prenatal testing or preimplantation genetic diagnosis (PGD), can be a good choice for some, but they are not for everyone. Some people considering family planning may not be able to utilize these options, as they may find some of these options cost prohibitive or they may have concerns about ethical issues raised with these choices. In these situations, options such as adoption or using donors can be the means to start their own family.


Traditional option of an infant or child is a long-standing, 
well-established option for those wanting to start or 
expand a familyTraditional infant or child adoption has been a long-standing option for many people searching for an alternative way to build a family. There are many different types of adoption, which differ based on where the child is from (domestic or international), how the child is found (using an agency or through a private source) and whether or not there would be a continued relationship of some kind with the biological parents (open or closed adoption). It is important for a family considering adoption to research and identify all of the pros and cons for each of these options. It is also important to know that things like the child’s age, location, and source can all impact the overall costs and fees that are associated with the adoption process. Although there are sometimes grants and sliding-scale fees available, the overall cost of adoption can quickly add up when including things like fees, legal representation and travel costs, resulting in expenditures often ranging between $10,000–$40,000. There are many agency websites, but the best places to start research on the adoption process are national organizations such as National Adoption Center or AdoptUSKids (an organization for adopting foster children).

Embryo adoption is a relatively new method of adoption in which the adopting parents get to be involved from the start of pregnancy. With embryo adoption, couples who have created embryos using in vitro fertilization (IVF) donate unused embryos to the adopting parents. The embryo is then implanted in the uterus of the adoptive mother in hopes that she will become pregnant and ultimately give birth to the adopted child. Because the embryos are donated from couples who no longer wish to use them, the cost of embryo adoption can be much lower than alternatives such as egg donation, in which the female donor typically is paid (see below). However, there are still costs associated with the transfer of the embryo to the adopting mother, as well as agency fees. Depending on state and agency regulations, people considering embryo adoption may have to go through a “home study,” which can also add fees. A home study assesses a family’s suitability to adopt a child or embryo by ensuring that the child’s needs would be met by that family. With home study fees and procedure fees, the average cost for embryo adoption is $10,000–$15,000, and this does not ensure a successful pregnancy. As with all of these options, it is important to do thorough research and weigh all the pros and cons. A good place to start is the Embryo Adoption Awareness Center.

Using a donor

For men who have Huntington disease and are considering family planning options, using donor sperm is an option. The most common process is to start with a reputable sperm bank which allows couples to review the sperm donors’ histories and make selections based on characteristics such as physical description, ethnicity, age, career, education, personal interests and personality traits. Typically, sperm banks are helpful and safe to use as they will run routine screening for things like sexually transmitted diseases and common genetic conditions. Reputable sperm banks will also monitor how many people use a particular donor within a certain population, and may even keep track of successful pregnancies to ensure that the donated sperm is successful in yielding a pregnancy, as well as identifying possible genetic conditions. Some people opt for a private donor, such as a family member or close friend. These donors are not necessarily screened as thoroughly as sperm bank donations. But they allow for a closer relationship with the donor or, if a family member is used, a genetic relationship within the family will be maintained. In general, the process of using sperm donation and insemination can cost up to $1,000, depending on a variety of factors including where the sperm is obtained and whether the insemination process is achieved at home or in a doctor’s office with assistance. 

For women who have HD and are considering family planning options, egg donation is a possibility. Similar to sperm banks, there are facilities that can help connect donors and couples. Donor selections can be made based on characteristics such as physical descriptions, ethnicity, age, career, education, personal interests and personality traits. The woman providing the egg, however, goes through a more invasive process then men go through to donate sperm. To donate eggs, women must have a series of hormone injections in order to produce more than one egg at a time, and outpatient surgery is required in order to harvest these eggs. The process can cost the adopting family $15,000–$50,000. As with sperm donation, it is possible to use a friend or family member as the egg donor.
It is important to remember to research the pros and cons thoroughly before making any decision in order to select an option that is right for you and your family. A genetic counselor in your area may be able to help you get started or guide you through this process (find a genetic counselor through the National Society of Genetic Counselors). Whether through the various options discussed in these articles or the old-fashioned way, having children and building a family is every person’s right, and no one should tell you not to have children just because you or your partner has or is at risk for HD. We hope these options have provided possibilities to families who would like to have children, but do not want to pass on HD.
Click here to read about further options involving prenatal and preconception options.