Informed consent is the process in which a doctor (or any other healthcare professional) educates their patient about the potential benefits, risks, or other important information related to a specific treatment or intervention.
Using this information, you can then make an informed decision for yourself about your own medical care, such as whether to agree to a specific approach to treatment.
Although informed consent is one of the most important elements of medical care, 2009 research suggests that informed consent during maternity care is often lacking.
Studies have shown a huge inconsistency between what people want to know about their pregnancy — such as what tests to take or the potential complications of childbirth — and how much information providers are sharing.
This article will discuss the importance of informed consent during pregnancy and other things you should know about the journey, as well as share some helpful resources for Black, Indigenous, and People of Color (BIPOC) and LGBTQIA+ parents-to-be.
What is informed consent in pregnancy?
So, what exactly does informed consent look like during pregnancy? According to the American College of Obstetricians and Gynecologists (ACOG), proper informed consent during your pregnancy has three important parts:
- Understanding. Your doctor is responsible for taking the time to ensure that they understand your personal situation, including any possibilities that may be unique to you during your pregnancy. Your doctor also has a responsibility to speak with you in a way that ensures you can also understand your own situation, as well.
- Knowledge. Your doctor has a responsibility to educate you on any diagnosis you receive, including what your outlook is because of that diagnosis. You have a right to know about any treatment options for your condition, including alternative treatment options or no treatment at all if this is what you choose.
- Choice. You have freedom of choice during your pregnancy — and you must be able to give your free, intentional, and voluntary consent. You should never be coerced or pressured into treatments or interventions that you don’t want, and your doctor should never move ahead with any medical choices without your consent (unless you are physically or mentally unable to give it).
What tests to ask for during pregnancy
Routine testing during pregnancy is an important part of keeping you and your baby healthy. It’s also a crucial way to keep yourself informed about anything that you may need to be aware of, both during pregnancy and after baby is born.
Below are some of the most common tests that healthcare professionals recommend during early and late pregnancy.
Early on in your pregnancy, your doctor will recommend a handful of tests that help give a bigger picture of your health, as well as the health of your baby.
One of the most important reasons for doing routine testing during early pregnancy is so that you can identify or even rule out any potential complications that may arise.
Here are some of the most common tests you should ask about during the first and second trimesters.
A complete blood count (CBC) is used to check your levels of red and white blood cells, proteins, and platelets, which can help your doctor determine if you have anemia, infections, or other conditions.
A blood type test allows your doctor to find out your blood type and Rh factor, which is important in making sure that your baby doesn’t experience any complications during pregnancy due to Rh incompatibilities.
A urinalysis can help your doctor determine if you have any infections of the urinary tract or even other conditions, such as preeclampsia. Preeclampsia is when you have new high blood pressure and at least one related symptom, and it can be a serious pregnancy complication if left untreated.
A urine culture can test for specific infections of the bladder and kidneys, which can also potentially cause pregnancy complications if not treated.
Infectious disease testing
Bacterial and viral infections can spread to your baby during pregnancy, during delivery, or after your baby is born, according to the National Institutes of Health.
That’s why it’s important to get tested — and treated, if necessary — for any infections you might have that could affect your baby.
Common infectious disease tests include:
- rubella, also called German measles, which may lead to potential birth defects
- hepatitis B virus (HBV) and hepatitis C virus (HCV), both of which can lead to complications such as liver disease or liver cancer later in life
- HIV, which lowers the ability of the immune system to fight infections and can eventually lead to AIDS if left untreated
- sexually transmitted infections (STIs), such as chlamydia, gonorrhea, or genital herpes that may potentially lead to health concerns during and after delivery
- tuberculosis (TB), which is a lung infection that can seriously damage the lungs if left untreated
Other infections your doctor or healthcare professional may test for if you have signs or symptoms include:
- cytomegalovirus (CMV)
- bacterial vaginosis
- fifth disease
- human papillomavirus (HPV)
- Lyme disease
- Zika virus
If you have a family history of genetic disorders, your doctor may recommend something called genetic counseling.
During genetic counseling, you’ll meet with a specialist called a genetic counselor to review your medical and family history. Your genetic counselor can help you make an informed decision about any genetic testing you might want to do.
They can also help you interpret those results, so you can make informed decisions about your pregnancy and your baby’s future.
As your pregnancy progresses, especially into the third trimester, your doctor may want to repeat some of the tests you’ve already had done, such as the CBC test. Your doctor might also recommend additional testing, just to make sure that you and your baby remain healthy as your delivery date approaches.
Here are some of the most common tests you may want to ask about during the third trimester.
A glucose challenge is an especially important test during late pregnancy because it can help check for a condition called gestational diabetes. During a glucose challenge, you’ll drink a glucose (sugar) solution and have your blood sugar levels checked after an hour.
If your blood sugar levels are too high, your doctor will recommend a glucose tolerance test.
A glucose tolerance test is a longer version of a glucose challenge. A healthcare professional will check your blood sugar levels over multiple hours to see whether you have gestational diabetes.
Group B streptococcus (GBS) testing
A group B streptococcus (GBS) test is generally administered anywhere between 35 and 37 weeks of pregnancy to check for this strain of bacteria, which is commonly found in the rectum and vagina.
Since GBS can cause complications if your baby is exposed to it during delivery, it’s important to be tested and treated for this infection, if necessary.
Read this article for more information about prenatal testing.
Questions for your healthcare professional
Whether you’ve been planning a pregnancy, recently found out you’re pregnant, or are just on the search for someone new, here are a few important questions to ask when looking for a doctor:
- Do you take my health insurance? Between routine bloodwork, prenatal visits, hospital delivery, and postnatal checkups, pregnancy care can be expensive (even with insurance!). Because of this, one of the most important questions you can ask any potential doctor is whether they take your insurance and what services are covered at what cost.
- How will we collaborate on my informed care? Unfortunately, informed pregnancy care is still something of a work in progress, but that doesn’t mean you should go without it. Any good doctor will understand the importance of informed care and work with you to make sure that you are making the best decisions for yourself and your baby.
- What services will I be offered during my pregnancy? Many people already have a vision of what they want for their pregnancy — from prenatal care to the delivery of their baby to the support they’ll need afterward. It’s important to make sure that you and your future doctor are on the same page about these needs.
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Informed pregnancy care and Black women
According to a 2021 review of studies, research over the past few decades has shown an overall increase in pregnancy-related deaths in the United States. Roughly 700 women die from pregnancy and pregnancy-related complications every single year, per the Centers for Disease Control and Prevention (CDC).
Although this risk can affect pregnant people of all races and ethnicities, the majority of pregnancy-related deaths happen to Black women and other Women of Color. A report released by the CDC in 2019, which covered pregnancy-related deaths from 2007 to 2016, found that Black women experienced 3.2 times more pregnancy-related deaths than white women.
One of the biggest reasons that Black women are more disproportionately at risk of pregnancy-related complications is because of barriers to access to prenatal and postnatal care, such as:
- Financial barriers. Financial barriers can prevent Black women from accessing affordable pregnancy care, stable housing, or reliable transportation
- Social barriers. Social barriers can make it hard for Black women to receive adequate support from their family, friends, or even healthcare professionals.
- Healthcare barriers. Healthcare barriers can make it difficult for Black women to have access to healthcare education, culturally competent providers, and timely care.
Pregnancy resources for Black women
If you’re interested in checking out some of the pregnancy resources available for Black women, here are a few to get you started:
- National Birth Equity Collaborative (NBEC). NBEC promotes “Black maternal, infant, sexual, and reproductive wellbeing” through education, research, and advocacy. You can find a list of their nationwide events, such as Black Maternal Health Week, here.
- Black Mamas Matter Alliance (BMMA). BMMA works to advance Black maternal health through research, policy changes, and advanced care for Black pregnant people. Here you can find a full page of resources, including virtual events, literature, and more.
- Resource Guide for Black Mothers. The Resource Guide for Black Mothers was created by pediatric specialist Dr. Terri, in conjunction with Pampers, to support Black mothers during pregnancy. You can find recommended books, podcasts, organizations, and plenty of other resources in her detailed guide.
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Informed pregnancy care and other Women of Color
Other Women of Color are also disproportionately affected by pregnancy complications, with statistics from 2019 showing that American Indian and Alaska Native women are 2.3 times more likely to die from pregnancy-related complications than white women.
There are similar pregnancy-related risks between white women and certain other Women of Color, such as Asian and Pacific Islander women or Hispanic women — but people in these communities still face barriers to informed pregnancy care.
Pregnancy resources for Women of Color
If you’re looking for pregnancy resources that are inclusive to people of color, consider checking these out:
- Perinatal Services BC. Perinatal Services BC is geared toward helping Indigenous pregnant people living in British Columbia. You can find a full page of Indigenous Resources and their informative and helpful “Honouring Indigenous Women’s and Families’ Pregnancy Journeys” handout here.
- Nacersano by March of Dimes. Nacersano is a resource that helps provide pregnancy-related information for Spanish-speaking pregnant people and their families. It’s a part of March of Dimes, a nonprofit organization that advocates for the health of mothers and babies through education, advocacy, and research.
- Supporting Mamas. Supporting Mamas is a peer-run group dedicated towards providing information, resources, and support for pregnant people. You can find resources for Asian American Pacific Islander mothers, including information about support groups, here.
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Informed pregnancy for LGBTQIA+ people
Informed care is important for every individual, no matter their race, ethnicity, religion, gender, or sexual orientation.
Yet the LGBTQIA+ community often faces significant disparities when it comes to healthcare, according to the Office of Disease Prevention and Health Promotion (ODPHP) — and this certainly includes pregnancy-based healthcare.
For example, a 2021 study found huge inconsistencies in LGBTQIA+-related curricula in some nursery and midwifery programs around the United Kingdom and Ireland. Since hundreds of thousands of these types of programs exist all around the world, these inconsistencies in healthcare can affect LGBTQIA+ pregnant people everywhere.
With upward of 3.7 million children being raised in LGBTQIA+ families, it is even more important for the LGBTQIA+ community to have access to informed care when choosing to grow their families. This includes both cisgender women in the LGBTQIA+ community as well as transgender men, nonbinary folks, and gender nonconforming people who become pregnant.
Pregnancy resources for the LGBTQIA+ community
If you’re in search of LGBTQIA+ informed pregnancy resources for yourself or someone you love, here are good places to start:
- Family Equality. Family Equality is a nonprofit organization that strives to advance the lives of LGBTQIA+ families through education, community building, and policy change. You can find their full page of trans family building resources, including both trans and nonbinary fertility education, here.
- Postpartum Support International. Postpartum Support International is an organization that provides postpartum support to parents worldwide. You can find their page of resources for queer and trans parents, including their find a healthcare professional tool, here.
- Queering Parenthood. Queering Parenthood is a resource created by LGBTQIA+ and ally researchers at the University of Toronto to help provide resources and support for queer families. You can find a long list of resources for LGBTQIA+ families (as well as service providers and researchers) here.
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Warning signs of potential health complications during pregnancy
Pregnancy is a time of overwhelming change. Even with the most informed pregnancy care, sometimes you’re still left wondering what’s “normal” and what’s not.
While most of the small (and big) changes you’ll undergo during and after pregnancy are healthy and typical, here are some signs that can indicate potential health concerns, according to the CDC:
- persistent or worsening headache
- severe fatigue
- vision changes
- chest pain
- increased heart rate or heart palpitations
- difficulty breathing
- severe nausea or stomach pain
- persistent vomiting
- swelling of the face or hands
- swelling, redness, and pain in the arm or leg
- slowed or stopped movements during pregnancy
- vaginal bleeding during or after pregnancy
- fever of 100.4°F (38°C) or above
- thoughts of harming yourself
- thoughts of harming your baby
If you’re experiencing any of the symptoms mentioned above (or anything else that feels “off”) during or after your pregnancy, contact a doctor as soon as possible to get checked out. Even if it turns out to be nothing serious, it could still save your or your baby’s life if something is wrong.
While growing your family can be a beautiful experience, it can also feel daunting at times, both for you and your loved ones.
But even if pregnancy feels overwhelming, that doesn’t mean that it should be confusing or scary — which is why informed care is so important.
With the right information at your fingertips, you can make the best decisions for you and your baby at every stage of your pregnancy and beyond.