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Ethical considerations of mandatory pregnancy screening for chromosomal disorders: A Guidance

Published by healthfulpsychology
Ethical considerations of mandatory pregnancy screening for chromosomal disorders: A Guidance
Contents
Background ………………………………………1
  
Introduction……………………………………….2
Ethical Considerations ………………………….2-5
Pros and cons of NIPT………………………..…5-6
Conclusions ………………………………………6-7
References…………………………………………7-8
Background
The purpose of this guidance is to present evidence surrounding ethical considerations regarding prenatal screening for chromosomal disorders; the pros and cons of making this procedure mandatory for expecting mothers, and the rules and regulations healthcare practitioners are advised to abide by. Pregnancy screening for chromosomal disorders could mean several things for different individuals, and this is important to consider in the application of healthcare systems. Knowledge of chromosomal disorder risk could result in dilemmas if pregnant women and couples’ choice is not in line with their cultural or religious needs. The overall evidence in the literature regarding pregnancy screening for chromosomal disorders highlight the role of choice in the decision-making process.
Introduction
Genomic medicine advancement has led to an important change in the types of genetic testing available for pregnant mothers, such as non-invasive prenatal testing (NIPT). For this guidance article, this method will be of main focus.
The National Screening Committee (NSC) has advised that every pregnant woman is offered to undergo screening for chromosomal abnormality; Down’s Syndrome (DS). According to the National Health Service (NHS), the discovery rate for this is at 85%, where about 2.5% represents a positive screen (Liang et al., 2013).  If there’s a higher risk of DS, they are offered invasive diagnostic test such as chorionic villus sampling (CVS) and/or amniocentesis (Laglois and Brock, 2013). In the process, further chromosomal disorders could be found. The testing is done between the 10th to 14th week of pregnancy.
Ethical Considerations
Utilitarianism (Smart and Williams, 2002) state that moral actions depend on their consequences. This theory focuses on good or bad through the effect of the consequences, for example, actions are considered right if they produce highly positive levels of happiness. This argument can be used in the event of screening for chromosomal abnormalities in order to reduce babies born with congenital conditions, in order to reduce responsibility for the parents and at large, society thus, the choice of termination of pregnancy produces the best value.
The second theory of decision-making is put forward by O’Neill (2002), which takes a Kantian perspective; rightness is not measured by the outcome but instead, by intention. This perspective’s foundation is based on respect and is what bioethics follow in order to provide ethical guidelines which fit every individual in a multicultural society.
In the UK, the NSC aim to set guidelines to aid primary care provide clear and concise information to pregnant women and couples about the availability of NIPS for chromosomal disorders. NIPT test is in the process of being made available at no cost to pregnant women who may be at risk (advanced age).
Before pregnant women and couples are offered NIPT for potential chromosomal disorders at 10 to 14 weeks of pregnancy, they are provided with non-directive information about chromosomal disorders and interventions that are available should their results come back positive for a chromosomal disorder (Dondorp et al., 2015). Abortion is an option for couples to consider if further testing confirms chromosomal abnormalities. This means that agency of choice is given to the expecting parent(s), without coercion from the healthcare practitioner. Non-directive counselling in the process of offering this service is expected of healthcare practitioners, to facilitate patient autonomy (Papp et al., 1994).  If patient autonomy is intervened or restricted it is considered unethical in practice (Wright and Chitty, 2009).
The consensus in clinical guidelines in the UK highlights the importance of facilitating informed choice for pregnant women and couples (NSC, 2011). If a couple wishes to terminate the pregnancy due to a chromosomal abnormality, it can be psychologically demanding to make such a choice, especially one that is controversial in nature (Papp et al., 1994). This is because for some, termination of a pregnancy based on, for example, Down Syndrome is unethical as the foetus does not have the right to protection from harm. Whilst a foetus doesn’t have legal status as that of a child or adult, the moral status is often controversial (Feinberg, 1980). This is because in India for example, the state has banned sex determination diagnosis, due to a strong cultural preference for a male child. On this basis, it could be comparable with sex determination, as termination on the basis of chromosomal abnormality is discriminatory to disabled individuals in society (Asch, 1999).
The government has duties to make sure that public healthcare services are beneficial and are not causing harm to individuals. In case of costs, it is the state’s duty to provide healthcare treatments, services, and tests by funding healthcare services in the public (NHS, 2015). However, making NIPT mandatory for pregnant women could be seen as counterproductive as the policy itself is undermining the right to choose without coercion. Additionally, equality in society could be an issue as some applications of NIPT may be considered unethical if they increase termination in pregnancies after diagnosis of chromosomal abnormalities thus, possibly promoting inequality and exclusion from society (Loane et al., 2013).

Equality in society is often praised, and whilst this is important, it does mean that societal inequalities still exist, especially at the levels of education, income, health, cultural, age, wealth, gender, and disability (Scope, 2014). However, it is important to remember the role of autonomy given to women through reproductive choice (Saul, 2003). In the UK, more women are choosing to enter motherhood at a later stage in life, which is a risk factor for NIPT (Office for National Statistics, 2016). The access to safe, secure prenatal screening for chromosomal abnormalities correlated with becoming mother at an older age such as Edwards’, Down’s, and Patau’s syndromes, could help pregnant women to either accept the possibility of giving birth to a child with congenital condition or pursue other interventions, if they choose not to go through with the pregnancy.
NIPT is currently available to only those who can afford it within the private healthcare sector at around £400-£900 (Antenatal Results and Choices, 2013). As such, health inequalities in this part could get worse over time, as it is not accessible for individuals from low-income backgrounds (NHS, 2015). If NIPS were mandatory for the diagnosis of chromosomal abnormalities, individuals from this socio-economic background would have to pay for a service they could not afford. As such, it is important that implementation is part of public healthcare service.
Pros and cons of NIPT
NIPT has the potential to increase couples and women’s reproductive choices. Given that accurate and balanced view is provided, NIPT has the potential to give accurate information regarding whether foetus does or does not have a congenital anomaly. This is helpful if couples and women are helped to psychologically prepare for caring for a disabled child. If termination is chosen, this can be detected as early as 10 weeks into pregnancy, avoiding late terminations (de Jong et al., 2015). Alternatively, NIPT could be viewed as a way to undermine reproductive choice, especially in the manner it is delivered. Pressure from healthcare practitioners to undertake NIPT can be viewed as a selection tool to eliminate genetic abnormalities in foetuses thus, increase in termination of pregnancies and fewer individuals in society with congenital conditions (Greely, 2011). In addition, informed consent is an issue regarding NIPT. Making this procedure mandatory would undermine patient autonomy, it also differs to other invasive screening methods. NIPT involves a blood test, and this is a concern as it is often seen as part of the routine prenatal procedure by pregnant women and couples thus, infringing on their informed consent (Liang et al., 2013).
Conclusions
Currently, NIPT costs £500-£900 in the private healthcare sector. It is important to note that before NIPT is made part of routine practice, evaluation of screening programmes must be carried out. Following the ethical guidelines, it is clear that pregnant women and couples should have the right to NIPT in a non-directive manner in order to find out genetic anomaly early in the pregnancy. Moreover, NIPT provides information which can help families and pregnant women make decisions on their own. In the event of NIPT being offered to women and couples, it is important that this is done in an environment which offers women and families autonomous, informed choices in regards to NIPT (Michie et al., 2002). By this logic, making pregnancy screening for chromosomal abnormalities mandatory is considered unethical, as it is infringing upon another’s autonomous choice, cultural, and possibly religious views. Ethical guidelines healthcare professionals follow involve freedom given to their patients, and the decisions they make in the consultation. Without this, women’s reproductive rights would be impacted negatively, as well as individuals who choose not to undergo pregnancy screening such as NIPT, even in the event of a congenital disorder. This is their right ‘to not know’, and continue with the pregnancy. In this case, support should be provided and their individual rights to be respected by healthcare professionals. Whilst NIPT is not a high risk for physical harm and miscarriage (Tabor and Alfirevic, 2010), it has potential to create psychological suffering for expecting mothers in the event of a chromosomal abnormality in the foetus, as well as in the process of waiting for results. It is unethical to force individuals to undergo psychological distress if they do not consent.

References

Akolekar R., Beta J., Picciarelli, G., Ogilvie, C., D’Antonio, F. (2015) Procedure-related risk of miscarriage following amniocentesis and chorionic villus sampling: a systematic review and meta-analysis. Ultrasound Obstet Gynecol. 45(1):16–26.
Antenatal Results and Choices. (2013). Non-invasive prenatal testing for Down’s syndrome (NIPT): http://www.arc-uk.org/tests-explained/down-s-syndrome-screening/non-invasive-prenatal-testing-for-down-s-syndrome Accessed April 23rd, 2017.
Asch, A. (1999). Prenatal diagnosis and selective abortion: a challenge to practice and policy American Journal of Public Health 89: 1649-57
de Jong, A., Maya, I., van Lith, J.M. (2015). Prenatal screening: current practice, new developments, ethical challenges. Bioethics. 29(1):1–8
Dondorp, W., de Wert, G., Bombard, Y. (2015). Non-invasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening. Eu Journal Hum Genet, 23 (11) pp. 1438–1450
Feinberg, J. (1980). The child’s right to an open future, in Whose child? Children’s rights, parental authority and state power, Genetic dilemmas and the child’s right to an open future Hastings Center Report 27: 7-15.
Greely, H.T. (2011). Get ready for the flood of fetal gene screening. Nature.        469(7330):289–291.
Langlois, S., Brock, J.A. (2013). Genetics Committee, Wilson RD, Audibert F, et al (2013) Current status in non-invasive prenatal detection of Down syndrome, trisomy 18, and trisomy 13 using cell-free DNA in maternal plasma. J Obstet Gynaecol Can 35: 177–181
Liang, D, Lv., W., Wang, H., Xu, L. (2013). Non-invasive prenatal testing of fetal whole chromosome aneuploidy by massively parallel sequencing. Prenat Diagn 33: 409–415
Loane, M., Morris. J.K., Addor, M.C. (2013) Twenty-year trends in the prevalence of Down syndrome and other trisomies in Europe: impact of maternal age and prenatal screening European Journal of Human Genetics 21: 27-33
Michie, S., Dormandy, E., Marteau, T.M. (2002). The multi-dimensional measure of informed choice: a validation study. Patient education and counselling 48:87-91
Morain, S., Greene, M.F., Mello, M.M. (2013). A new era in noninvasive prenatal testing. N Engl Journal of Med. 369(6):499–501.
National Screening Committee, Annual Report: Screening in England. London, 2011-12.
NHS England. (2015). Guidance for NHS commissioners on equality and health inequalities legal duties: https://www.england.nhs.uk/wp-content/uploads/2015/12/hlth-inqual-guid-comms-dec15.pdf. Accessed April 23rd, 2017.
NHS FASP. (2011). Screening for Down’s syndrome: UK NSC policy recommendations 2011–2014 Model of Best Practice. Exeter, United Kingdom: NHS Fetal Anomaly Screening Programme, UK National Screening Committee
Office for National Statistics (2016) Births in England and Wales: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/livebirths/bulletins/birthsummarytablesenglandandwales/2015. Accessed April 23rd, 2017.
O’Neill, O. (2002). Autonomy and trust in bioethics. Cambridge: Cambridge University Press.
Papp, Z.,  Tóth-Pál, E., Papp, C.S. (1994)Non-directive prenatal genetic counseling F.A. Chervenak (Eds.), The fetus as a patient, Parthenon, New York, London. pp. 71–77
SAUL, J. M. (2003). Feminism: issues & arguments. Oxford, Oxford University Press.
Scope (2014). Better living, higher standards: improving the lives of disabled people by 2020 http://www.scope.org.uk/Scope/media/Documents/Publication%20Directory/Scope-report-Better-living,-higher-standards.pdf. Accessed April 23rd, 2017.
Smart, J.J., Williams, B. (1990). Utilitarianism: For and against. Cambridge: Cambridge University Press.
Tabor, A., Alfirevic, Z. (2010). Update on procedure-related risks for prenatal diagnosis techniques. Fetal Diagn Ther 27: 1–7

Wright, C.F., Chitty, L.S. (2009). Cell-free fetal DNA and RNA in maternal blood: implications for safer antenatal testing. BMJ. 339:b2451

Pursuing a Career in Health Psychology or Clinical Psychology

Published by healthfulpsychology

Health Psychologist

Health psychologists apply their understanding of health and psychology to support people to deal with the psychological and emotional components of health and illness. They support people who are dealing with a number of illnesses, whether it is a chronic illness or cancer diagnosis. They help promote healthy lifestyles and motivate individuals to stop smoking (smoking cessation) or lose weight. When offering 1:1 support, health psychologists look at several factors. These include environmental, psychological, socio-economic as well as physical health factors in order to develop an intervention for the individual.

Despite the fact that health psychology is a sub-specialty field of clinical psychology, it has grown in recent years. Generally speaking, health psychologists work with adults, children and older adults. This is similar to clinical psychologists, both professionals may work within multi-disciplinary teams (nurses, doctors, dieticians, surgeons etc). Interestingly, you can also find health psychologists working in a community health setting, hospitals, university research teams and public health settings. Health psychologists can sometimes work independently with other healthcare organisations for consultation. They partake in the overall improvement of healthcare practice through research, such as training doctors and other healthcare practitioners on how they can communicate better with clients.

Clinical psychologist

Clinical psychologists help people with their mental, emotional and physical problems in their life such as depression, psychosis, eating disorders and addiction. Clinical psychologists diagnose mental health conditions through observation, psychometric tests, and interviews. This is when there is some overlapping with health and counselling psychology, however, the main aim of clinical psychology is to improve the psychological wellbeing of the individual.

Requirements for Health Psychology Training

There are several routes you can take to become a chartered member of the British Psychological Society (BPS). To become a health psychologist, the following qualifications are required:

  • Graduate Basis for Charted Membership (GBC) which is gained by completing an accredited undergraduate degree in psychology. Alternatively, you can complete a BPS accredited conversion course.
  • BPS accredited MSc in Health Psychology (Stage 1)

In addition to the above, you will need to complete ONE of the following qualifications:

There is only one NHS-funded scheme for Trainee Health Psychologists funded by the Scottish government. There is potential to apply for funding from employers and other funding institutions to complete the doctorate. Some Psychology PhD students also complete the BPS qualification alongside their research, as this route affords them flexibility.

Clinical Psychology Training

To become a Clinical Psychologist is a little bit more straightforward, even if it’s an incredibly competitive process. To undertake clinical training the following is required:

  • Graduate Basis for Charted Member (GBC), attained by completing a BPS accredited degree in Psychology (typically 2:1) or its equivelent in conversion course.
  • BPS accredited Doctorate in Clinical Psychology – NHS funded 3 year training.

Majority of clinical psychology doctorate courses can be applied via Clearing House (UCAS but specific for the doctorate in clinical psychology).

In order for you to use the title ‘Clinical Psychologist’, you are required to register with the Health and Care Professions Council (HCPC), therefore, the doctorate must also be accredited by HCPC.

If you are an aspiring clinical psychologist, please be sure to keep up to date with Clearing House’s important dates regarding the application process.

Best of luck to all aspiring clinical psychologists applying for 2022 intake.

Adult Autism Diagnosis in the UK

Published by healthfulpsychology

I’ve grown up and ‘functioned’ in society just about right until my late teens when I realise there’s something that’s not quite right. Growing up, I was often labelled as clumsy and forgetful. I couldn’t keep friendships going past certain age. There was only one friend with whom I’ve remained in contact even after moving around. I saw morals/choices as black and white, right and wrong. There was no grey area. I did my fair bit of research, and still couldn’t quite figure out what was missing. One day, I came across Simon Baron-Cohen’s research in Autism and realised I might be on the spectrum. I visited my GP and told them that I’d like to be referred for an assessment. Unfortunately, they dismissed my concerns, told  me I might possibly be dyslexic and that ‘there’s no intervention for autism, so a diagnosis for adults is useless’.

Luckily, I had to relocate for a new job and when I found myself struggling again, I visited my GP. I’ve told them of my concerns and that I’d like to be referred for a diagnosis. They completed the short Autism Quotient (AQ) questionnaire with me. After about 15 minutes, he said that I was likely to be on the spectrum and that he will refer me for an official diagnosis.

The Adult Autism Diagnosis team sent me a letter for a family member to complete about my early years.  There was also a section where I had to write the difficulties I’d faced growing up such as social interaction and communication difficulties. Waiting period for an autism diagnosis is roughly about 12-18 months, depending on where you live in the UK. It took around 34 weeks (8-9 months) of being on the waiting list before I was invited for an assessment.

I was persistent in telephoning the admin office to see where I was on the waiting list.  I would call every other month, to check on how I was getting along on the waiting list. I wanted to know exactly how long it would take before I could get an interview date with the Psychiatrist and Occupational Therapist for my assessment. I had also started a course at university (part of my job) and wanted support from my tutors. They were unable to offer me support unless I could show an official letter of my diagnosis. I made sure that I let the admin office know exactly the things that there changing in my life and why I felt that I needed an assessment as soon as possible. There was a cancellation one day and they invited me for an assessment sometime in the Spring. The appointment was advance enough as to not produce any anxiety in me.

Once I received the location and time of the assessment, I became extremely anxious on the day. I started to worry about whether I was in fact on the spectrum… whether my hunch was wrong. I went to the reception, had my headphones in so that I didn’t feel distracted by the external noise. I arrived 1 hour before my appointment and waited patiently, reading a book.

When the Occupational Therapist and Psychiatrist called me in for the assessment, I stumbled as I rushed to keep up. I went to the assessment room. I was asked about my early childhood, asked to creatively come up with stories… which I struggled with. I had to read a book and apparently later learned that I had missed all the facial expressions and focused mainly on small details and what the book was factually presenting (visually).

It has been a somewhat emotional journey in discovering myself in a new light. I can’t thank the two professionals who have given my diagnosis, especially the occupational therapist who later helped me with my sensory profile.

It’s incredibly difficult for women to get a diagnosis as professionals often dismiss or misdiagnose them with personality disorder. I was lucky enough to have had the experience of two professionals who were accommodating but also asking me the appropriate questions. They also screened me for psychological disorders, suicidal tendencies, whether I was a threat to others or myself. I found that it was structured and helpful, even if nerve wracking.

If you need help or what you can do next, please read the NHS ADULT AUTISM DIAGNOSIS.

Ethical considerations of mandatory pregnancy screening for chromosomal disorders: A Guidance

Published by healthfulpsychology

 

 
Background
The purpose of this guidance is to present evidence surrounding ethical considerations regarding prenatal screening for chromosomal disorders; the pros and cons of making this procedure mandatory for expecting mothers, and the rules and regulations healthcare practitioners are advised to abide by. Pregnancy screening for chromosomal disorders could mean several things for different individuals, and this is important to consider in the application of healthcare systems. Knowledge of chromosomal disorder risk could result in dilemmas if pregnant women and couples’ choice is not in line with their cultural or religious needs. The overall evidence in the literature regarding pregnancy screening for chromosomal disorders highlight the role of choice in the decision-making process.
Introduction
Genomic medicine advancement has led to an important change in the types of genetic testing available for pregnant mothers, such as non-invasive prenatal testing (NIPT). For this guidance article, this method will be of main focus. The National Screening Committee (NSC) has advised that every pregnant woman is offered to undergo screening for chromosomal abnormality; Down’s Syndrome (DS). According to the National Health Service (NHS), the discovery rate for this is at 85%, where about 2.5% represents a positive screen (Liang et al., 2013).If there’s a higher risk of DS, they are offered invasive diagnostic test such as chorionic villus sampling (CVS) and/or amniocentesis (Laglois and Brock, 2013). In the process, further chromosomal disorders could be found. The testing is done between the 10th to the 14th week of pregnancy.
Ethical Considerations
Utilitarianism (Smart and Williams, 2002) state that moral actions depend on their consequences. This theory focuses on good or bad through the effect of the consequences, for example, actions are considered right if they produce highly positive levels of happiness. This argument can be used in the event of screening for chromosomal abnormalities in order to reduce babies born with congenital conditions, in order to reduce responsibility for the parents and at large, society thus, the choice of termination of pregnancy produces the best value.
The second theory of decision-making is put forward by O’Neill (2002), which takes a Kantian perspective; rightness is not measured by the outcome but instead, by intention. This perspective’s foundation is based on respect and is what bioethics follow in order to provide ethical guidelines which fit every individual in a multicultural society.
In the UK, the NSC aim to set guidelines to aid primary care provide clear and concise information to pregnant women and couples about the availability of NIPS for chromosomal disorders. NIPT test is in the process of being made available at no cost to pregnant women who may be at risk (advanced age).
Before pregnant women and couples are offered NIPT for potential chromosomal disorders at 10 to 14 weeks of pregnancy, they are provided with non-directive information about chromosomal disorders and interventions that are available should their results come back positive for a chromosomal disorder (Dondorp et al., 2015). Abortion is an option for couples to consider if further testing confirms chromosomal abnormalities. This means that agency of choice is given to the expecting parent(s), without coercion from the healthcare practitioner. Non-directive counselling in the process of offering this service is expected of healthcare practitioners, to facilitate patient autonomy (Papp et al., 1994). If patient autonomy is intervened or restricted it is considered unethical in practice (Wright and Chitty, 2009).
The consensus in clinical guidelines in the UK highlights the importance of facilitating informed choice for pregnant women and couples (NSC, 2011). If a couple wishes to terminate the pregnancy due to a chromosomal abnormality, it can be psychologically demanding to make such a choice, especially one that is controversial in nature (Papp et al., 1994). This is because for some, termination of a pregnancy based on, for example, Down Syndrome is unethical as the fetus does not have the right to protection from harm. Whilst a fetus doesn’t have legal status as that of a child or adult, the moral status is often controversial (Feinberg, 1980). This is because in India for example, the state has banned sex determination diagnosis, due to a strong cultural preference for a male child. On this basis, it could be comparable with sex determination, as termination on the basis of chromosomal abnormality is discriminatory to disabled individuals in society (Asch, 1999).
The government has duties to make sure that public healthcare services are beneficial and are not causing harm to individuals. In case of costs, it is the state’s duty to provide healthcare treatments, services, and tests by funding healthcare services in the public (NHS, 2015). However, making NIPT mandatory for pregnant women could be seen as counterproductive as the policy itself is undermining the right to choose without coercion. Additionally, equality in society could be an issue as some applications of NIPT may be considered unethical if they increase termination in pregnancies after diagnosis of chromosomal abnormalities thus, possibly promoting inequality and exclusion from society (Loane et al., 2013).
Equality in society is often praised, and whilst this is important, it does mean that societal inequalities still exist, especially at the levels of education, income, health, cultural, age, wealth, gender, and disability (Scope, 2014). However, it is important to remember the role of autonomy given to women through reproductive choice (Saul, 2003). In the UK, more women are choosing to enter motherhood at a later stage in life, which is a risk factor for NIPT (Office for National Statistics, 2016). The access to safe, secure prenatal screening for chromosomal abnormalities correlated with becoming mother at an older age such as Edwards’, Down’s, and Patau’s syndromes, could help pregnant women to either accept the possibility of giving birth to a child with congenital condition or pursue other interventions, if they choose not to go through with the pregnancy.
NIPT is currently available to only those who can afford it within the private healthcare sector at around £400-£900 (Antenatal Results and Choices, 2013). As such, health inequalities in this part could get worse over time, as it is not accessible for individuals from low-income backgrounds (NHS, 2015). If NIPS were mandatory for the diagnosis of chromosomal abnormalities, individuals from this socio-economic background would have to pay for a service they could not afford. As such, it is important that implementation is part of the public healthcare service.
 
Pros and cons of NIPT
NIPT has the potential to increase couples and women’s reproductive choices. Given that an accurate and balanced view is provided, NIPT has the potential to give accurate information regarding whether fetus does or does not have a congenital anomaly. This is helpful if couples and women are helped to psychologically prepare for caring for a disabled child. If termination is chosen, this can be detected as early as 10 weeks into pregnancy, avoiding late terminations (de Jong et al., 2015). Alternatively, NIPT could be viewed as a way to undermine reproductive choice, especially in the manner it is delivered. Pressure from healthcare practitioners to undertake NIPT can be viewed as a selection tool to eliminate genetic abnormalities in fetuses thus, increase in termination of pregnancies and fewer individuals in society with congenital conditions (Greely, 2011). In addition, informed consent is an issue regarding NIPT. Making this procedure mandatory would undermine patient autonomy, it also differs to other invasive screening methods. NIPT involves a blood test, and this is a concern as it is often seen as part of the routine prenatal procedure by pregnant women and couples thus, infringing on their informed consent (Liang et al., 2013).
Conclusions
Currently, NIPT costs £500-£900 in the private healthcare sector. It is important to note that before NIPT is made part of routine practice, evaluation of screening programmes must be carried out. Following the ethical guidelines, it is clear that pregnant women and couples should have the right to NIPT in a non-directive manner in order to find out genetic anomaly early in the pregnancy. Moreover, NIPT provides information which can help families and pregnant women make decisions on their own. In the event of NIPT being offered to women and couples, it is important that this is done in an environment which offers women and families autonomous, informed choices in regards to NIPT (Michie et al., 2002). By this logic, making pregnancy screening for chromosomal abnormalities mandatory is considered unethical, as it is infringing upon another’s autonomous choice, cultural, and possibly religious views. Ethical guidelines healthcare professionals follow involve freedom given to their patients, and the decisions they make in the consultation. Without this, women’s reproductive rights would be impacted negatively, as well as individuals who choose not to undergo pregnancy screening such as NIPT, even in the event of a congenital disorder. This is their right ‘to not know’, and continue with the pregnancy. In this case, support should be provided and their individual rights to be respected by healthcare professionals. Whilst NIPT is not a high risk for physical harm and miscarriage (Tabor and Alfirevic, 2010), it has potential to create psychological suffering for expecting mothers in the event of a chromosomal abnormality in the fetus, as well as in the process of waiting for results. It is unethical to force individuals to undergo psychological distress if they do not consent.

 

 

References

Akolekar R., Beta J., Picciarelli, G., Ogilvie, C., D’Antonio, F. (2015) Procedure-related risk of miscarriage following amniocentesis and chorionic villus sampling: a systematic review and meta-analysis. Ultrasound Obstet Gynecol. 45(1):16–26.
 
Antenatal Results and Choices. (2013). Non-invasive prenatal testing for Down’s syndrome (NIPT): http://www.arc-uk.org/tests-explained/down-s-syndrome-screening/non-invasive-prenatal-testing-for-down-s-syndrome Accessed April 23rd, 2017.
 
Asch, A. (1999). Prenatal diagnosis and selective abortion: a challenge to practice and policy American Journal of Public Health 89: 1649-57
 
de Jong, A., Maya, I., van Lith, J.M. (2015). Prenatal screening: current practice, new developments, ethical challenges. Bioethics. 29(1):1–8
 
Dondorp, W., de Wert, G., Bombard, Y. (2015). Non-invasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening. Eu Journal Hum Genet, 23 (11) pp. 1438–1450
 
Feinberg, J. (1980). The child’s right to an open future, in Whose child? Children’s rights, parental authority and state power, Genetic dilemmas and the child’s right to an open future Hastings Center Report 27: 7-15.
 
Greely, H.T. (2011). Get ready for the flood of fetal gene screening. Nature.469(7330):289–291.
 
Langlois, S., Brock, J.A. (2013). Genetics Committee, Wilson RD, Audibert F, et al (2013) Current status in non-invasive prenatal detection of Down syndrome, trisomy 18, and trisomy 13 using cell-free DNA in maternal plasma. J Obstet Gynaecol Can 35: 177–181
 
Liang, D, Lv., W., Wang, H., Xu, L. (2013). Non-invasive prenatal testing of fetal whole chromosome aneuploidy by massively parallel sequencing. Prenat Diagn 33: 409–415
 
Loane, M., Morris. J.K., Addor, M.C. (2013) Twenty-year trends in the prevalence of Down syndrome and other trisomies in Europe: impact of maternal age and prenatal screening European Journal of Human Genetics 21: 27-33
 
Michie, S., Dormandy, E., Marteau, T.M. (2002). The multi-dimensional measure of informed choice: a validation study. Patient education and counselling 48:87-91
 
Morain, S., Greene, M.F., Mello, M.M. (2013). A new era in noninvasive prenatal testing. N Engl Journal of Med. 369(6):499–501.
 
National Screening Committee, Annual Report: Screening in England. London, 2011-12.
 
NHS England. (2015). Guidance for NHS commissioners on equality and health inequalities legal duties: https://www.england.nhs.uk/wp-content/uploads/2015/12/hlth-inqual-guid-comms-dec15.pdf. Accessed April 23rd, 2017.
 
NHS FASP. (2011). Screening for Down’s syndrome: UK NSC policy recommendations 2011–2014 Model of Best Practice. Exeter, United Kingdom: NHS Fetal Anomaly Screening Programme, UK National Screening Committee
 
Office for National Statistics (2016) Births in England and Wales: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/livebirths/bulletins/birthsummarytablesenglandandwales/2015. Accessed April 23rd, 2017.
 
O’Neill, O. (2002). Autonomy and trust in bioethics. Cambridge: Cambridge University Press.
 
Papp, Z.,Tóth-Pál, E., Papp, C.S. (1994)Non-directive prenatal genetic counseling F.A. Chervenak (Eds.), The fetus as a patient, Parthenon, New York, London. pp. 71–77
 
SAUL, J. M. (2003). Feminism: issues & arguments. Oxford, Oxford University Press.
 
Scope (2014). Better living, higher standards: improving the lives of disabled people by 2020 http://www.scope.org.uk/Scope/media/Documents/Publication%20Directory/Scope-report-Better-living,-higher-standards.pdf. Accessed April 23rd, 2017.
 
Smart, J.J., Williams, B. (1990). Utilitarianism: For and against. Cambridge: Cambridge University Press.
 
Tabor, A., Alfirevic, Z. (2010). Update on procedure-related risks for prenatal diagnosis techniques. Fetal Diagn Ther 27: 1–7
 
Wright, C.F., Chitty, L.S. (2009). Cell-free fetal DNA and RNA in maternal blood: implications for safer antenatal testing. BMJ. 339:b2451